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Giving Voice'': Evaluation of an Integrated Telehealth Community Care Model by Parents/Guardians of Children Diagnosed with Fetal Alcohol Spectrum Disorder in Manitoba
Abstract
Background:
In 2000, Manitoba began utilizing telehealth services for the assessment, diagnosis and follow-up of fetal alcohol spectrum disorders (FASDs). Since that time, the use of telehealth in Manitoba has expanded to the delivery of education and support to families caring for children with FASD in rural and remote areas of the province. The purpose of this study was to expand on a previous evaluation through a focus on the participant experience. Our objectives were thus to explore the experience of families with the telehealth process and to examine the use of telehealth in diagnostic assessment as well as follow-up post-clinical assessment.
Materials and methods:
Sixteen semistructured interviews were conducted with families who had participated in at least one diagnostic assessment and/or individual or group follow-up via telehealth offered through the Manitoba FASD Centre.
Results:
The majority of participants reported being happy with their experience(s) using telehealth for assessment, diagnosis, and/or follow-up support. Two general themes emerged from the data. The first theme is focused on the value of telehealth use for families with children living with FASD, whereas the second theme presents various needs of this client group.
Conclusions:
This study provides support for the use of telehealth as an effective technology beyond diagnosis for individuals with FASD and their families. Families support the utilization of this technology and, despite its minor shortcomings, appreciate the flexibility of telehealth, which allows them to remain in their home communities, connected to their families and support systems.
... Emerging international evidence points to the efficacy of technology in improving access to and continuity of care for children and youth with chronic and complex health conditions (Farmer & Muhlenbruck, 2001;Hines et al., 2019;Kronberg et al., 2021), speech and language delays (Coufal et al., 2018;Fairweather et al., 2016;Grogan-Johnson et al., 2011;Sutherland et al., 2021), hearing impairments (Behl et al., 2017;Constantinescu, 2012;First Nations Health Authority, 2015;Stredler-Brown, 2017) and different neurodevelopmental disorders 1 (NDDs) including fetal alcohol spectrum disorder (FASD) (Ens et al., 2010;Hanlon-Dearman et al., 2014) and autism (Alfuraydan et al., 2020;Boisvert et al., 2010;Ellison et al., 2021;Gibbs & Toth-Cohen, 2011;Johnsson & Bulkeley, 2021;Lerman et al., 2020;Meadan & Daczewitz, 2014;Ogourtsova et al., 2023;Vismara et al., 2012). Importantly, the use of technology as a mode of service delivery with this population does not typically replace in-person services as a 'distinct or separate intervention' but used in addition to some in-person services (Cason, 2014;Meadan & Daczewitz, 2014). ...
... The flexibility and responsivity of technologies can also fit easily into families' lives; supporting a coaching approach 2 in naturalistic settings and building parental self-efficacy (Behl et al., 2017;Cole et al., 2019;Finak et al., 2022;Hines et al., 2019;Kronberg et al., 2021;McCarthy et al., 2022;Poole et al., 2022;Stredler-Brown, 2017;Vismara et al., 2012;Wallisch et al., 2019). In the context of Indigenous families in Canada, virtual services can allow for specialized services to be provided in supportive community and home settings where family members and local service providers are more readily available (Canada's Health Informatics Association, 2013;Eriks-Brophy et al., 2008;Hanlon-Dearman et al., 2014). ...
... The findings of this scoping review clearly demonstrate that the emerging Canadian evidence base provides encouraging evidence on the efficacy of using different technological modalities to enhance the provision of a range of home-and community-based supports, information and services for children and youth with disabilities and their parents. This evidence is well aligned with international research published before (Behl et al., 2017;Farmer & enhancing their timely access to information, services and supports that would otherwise not be available without extensive time, travel and expense (Burek et al., 2021;Hanlon-Dearman, et al., 2014;Hatton et al., 2019;Shire et al., 2021;Tan-MacNeill et al., 2020;Williams et al., 2022). ...
In Canada and internationally, the use of technology to enhance community-based health and developmental services and supports with children and youth has increased dramatically as a result of the COVID-19 pandemic. In the Canadian context, how technology-enabled supports and services have developed and can be integrated as a long-term option in addition to in-person services requires further examination. This scoping review maps out existing and emerging themes in Canadian research published on how different technology modalities are being used in home and community settings with children and youth with disabilities and medical complexity and their families. A literature search conducted across seven databases between 2011 and 2023 resulted in potentially relevant publications, of which 12 met the inclusion criteria. The findings provide insights into how various technologies are being used and combined in order to provide parenting training and coaching and timely access to assessments in a continuum of care without the burden of travel time and costs. Also, the potential of technology to create peer support networks both for parents and older youth with disabilities. These findings can inform funding bodies and community organizations serving this population in undertaking in depth and critical analyses of how technology can be further integrated into hybrid models of service delivery. Further research and actions are also needed to address issues of digital equity. Gerlach, Using Technology CJDS 12.2 (September 2023) 81 Résumé Au Canada et dans le monde, l'utilisation des technologies pour améliorer les services et les ressources communautaires en matière de santé et de développement auprès des enfants et des jeunes a augmenté de façon spectaculaire en raison de la pandémie de COVID-19. La façon dont les ressources et les services technologiques se sont développés et peuvent être ajoutés dans les options à long terme en plus des services en personne nécessite un examen plus approfondi en contexte canadien. Cet examen de la portée cartographie les thèmes existants et émergents dans la recherche canadienne publiée sur la façon dont différentes modalités technologiques sont utilisées à domicile et dans la communauté auprès d'enfants et de jeunes ayant un handicap et des problèmes médicaux complexes et leurs familles. Une recherche documentaire menée dans sept bases de données entre 2011 et 2023 a abouti à des publications potentiellement pertinentes, dont douze répondaient aux critères d'inclusion. Les résultats donnent un aperçu de la manière dont diverses technologies sont utilisées ou combinées pour fournir de la formation et du coaching aux parents ainsi qu'un accès rapide aux évaluations dans un continuum de soins sans le fardeau associé au temps et aux frais de déplacement. En outre, les technologies ont le potentiel de créer des réseaux de soutien par les pairs pour les parents comme pour les jeunes ayant un handicap plus âgés. Ces résultats peuvent orienter les organismes de financement et les organismes communautaires desservant cette population souhaitant entreprendre des analyses approfondies et critiques de la façon dont les technologies peuvent être mieux intégrées au sein de modèles hybrides de prestation de services. De plus amples recherches et d'autres actions sont nécessaires pour résoudre les problèmes d'équité numérique.
... While telehealth has been suggested as an effective means for providing FASD diagnostic services, only three studies to date have explored the viability, effectiveness, and experiences of telehealth programs specific to FASD. All three of these studies focused on the FASD telehealth program in Manitoba, Canada, potentially limiting the generalizability for use in other provinces and territories (see Benoit et al. 2002;Ens et al. 2010;Hanlon-Dearman et al. 2014). Additionally, these three studies were qualitative in nature and examined the perceptions of stakeholders regarding the use of telehealth to provide a formal diagnosis and occasionally included follow-up support for caregivers and professionals in remote communities. ...
... For all three studies, the telehealth model was used to provide both assessment and follow up interventions for individuals with FASD and caregivers. In one study (Hanlon-Dearman et al. 2014), participants were offered the option to participate in a followup group. For a comparative summary of each of these studies including their telehealth models, important outcomes, and the advantages and barriers to telehealth, please refer to Table 1. ...
... Additional work beyond the early telehealth model of FASD diagnosis described by Benoit et al. (2002) includes the existing partnerships to provide FASD assessments via telehealth to two rural and remote communities in Manitoba: The Pas/Flin Flon and Norway House (Ens et al. 2010;Hanlon-Dearman et al. 2014). Ens et al. (2010) conducted 41 telehealth sessions between 2005 and 2009, resulting in 29 FASD diagnoses. ...
Fetal alcohol spectrum disorder (FASD) is a diagnostic term used to describe an array of structural, neurocognitive, and behavioral effects that result from prenatal alcohol exposure. While ongoing efforts have been made to increase the capacity of communities to provide early FASD diagnosis, there continues to be on-going challenges, particularly for remote and rural communities. Telehealth is the use of technology to connect communities at a distance and has been effectively used in medicine for several decades. This literature review describes the use of telehealth in FASD and other developmental disabilities and makes recommendations for how telehealth can be used to facilitate the assessment and diagnosis of FASD in rural and remote communities
... System experience was the most commonly measured dimension of satisfaction appearing in 29 studies (81%). It included the audio-visual quality of videoconferencing [28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45], accessibility of a service in one's local health care centre [31,35,37,38,40,[44][45][46][47][48][49][50][51], time and cost savings for patients [33, 36, 39-41, 43, 45, 46, 50, 52], patient comfort in participating in telehealth [34,37,39,[41][42][43][53][54][55][56][57], technical support and operations [28,29,31,32,35,48,53] and usability of telehealth technology [41,54,56]. There were high levels of satisfaction across all these domains, especially with regards to service accessibility. ...
... System experience was the most commonly measured dimension of satisfaction appearing in 29 studies (81%). It included the audio-visual quality of videoconferencing [28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45], accessibility of a service in one's local health care centre [31,35,37,38,40,[44][45][46][47][48][49][50][51], time and cost savings for patients [33, 36, 39-41, 43, 45, 46, 50, 52], patient comfort in participating in telehealth [34,37,39,[41][42][43][53][54][55][56][57], technical support and operations [28,29,31,32,35,48,53] and usability of telehealth technology [41,54,56]. There were high levels of satisfaction across all these domains, especially with regards to service accessibility. ...
... System experience was the most commonly measured dimension of satisfaction appearing in 29 studies (81%). It included the audio-visual quality of videoconferencing [28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44][45], accessibility of a service in one's local health care centre [31,35,37,38,40,[44][45][46][47][48][49][50][51], time and cost savings for patients [33, 36, 39-41, 43, 45, 46, 50, 52], patient comfort in participating in telehealth [34,37,39,[41][42][43][53][54][55][56][57], technical support and operations [28,29,31,32,35,48,53] and usability of telehealth technology [41,54,56]. There were high levels of satisfaction across all these domains, especially with regards to service accessibility. ...
Telehealth is an alternative method of delivering health care to people required to travel long distances for routine health care. The aim of this systematic review was to examine whether patients and their caregivers living in rural and remote areas are satisfied with telehealth videoconferencing as a mode of service delivery in managing their health. A protocol was registered with PROSPERO international prospective register of systematic reviews (#CRD42017083597) and conducted in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. A systematic search of Ovid Medline, Embase, CINAHL, ProQuest Health Research Premium Collection, Joanna Briggs Institute and the Cochrane Library was conducted. Studies of people living in rural and remote areas who attended outpatient appointments for a health condition via videoconference were included if the studies measured patient and/or caregivers’ satisfaction with telehealth. Data on satisfaction was extracted and descriptively synthesised. Methodological quality of the included studies was assessed using a modified version of the McMaster Critical Review Forms for Quantitative or Qualitative Studies. Thirty-six studies of varying study design and quality met the inclusion criteria. The outcomes of satisfaction with telehealth were categorised into system experience, information sharing, consumer focus and overall satisfaction. There were high levels of satisfaction across all these dimensions. Despite these positive findings, the current evidence base lacks clarity in terms of how satisfaction is defined and measured. People living in rural and remote areas are generally satisfied with telehealth as a mode of service delivery as it may improve access to health care and avoid the inconvenience of travel.
... The benefits reported include removing barriers to communication [47], providing reassurance for those with chronic illness [47], and feeling supported for those adolescents with eating disorders [29]. The majority of families felt satisfied with the digital communication tools [40,41]. All the families found these tools easy to use [20,30,35,44] and some said they would recommend them [39,40]. ...
... The majority of families felt satisfied with the digital communication tools [40,41]. All the families found these tools easy to use [20,30,35,44] and some said they would recommend them [39,40]. We found no studies reporting a difference in family and caregiver outcomes between the group using digital communication and the control or alternative intervention group (eg, telephone) [10,21,26,28,36,43] Armoiry et al JOURNAL OF MEDICAL INTERNET RESEARCH XSL • FO RenderX Figure 1. ...
Background:
The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may affect this relationship.
Objective:
The objective of our study was to describe, assess the feasibility of, and explore the impact of digital clinical communication between families or caregivers and health professionals.
Methods:
We searched the literature using 5 electronic databases. We considered all types of study design published in the English language from January 2009 to August 2015. The population of interest included families and caregivers of children and young people aged less than 26 years with any type of health condition. The intervention was any technology permitting 2-way communication.
Results:
We included 31 articles. The main designs were randomized controlled trials (RCTs; n=10), cross-sectional studies (n=9), pre- and postintervention uncontrolled (pre/post) studies (n=7), and qualitative interview studies (n=2); 6 had mixed-methods designs. In the majority of cases, we considered the quality rating to be fair. Many different types of health condition were represented. A breadth of digital communication tools were included: videoconferencing or videoconsultation (n=14), and Web messaging or emails (n=12). Health care professionals were mainly therapists or cognitive behavioral therapists (n=10), physicians (n=8), and nurses (n=6). Studies were very heterogeneous in terms of outcomes. Interventions were mainly evaluated using satisfaction or acceptance, or outcomes relating to feasibility. Clinical outcomes were rarely used. The RCTs showed that digital clinical communication had no impact in comparison with standard care. Uncontrolled pre/post studies showed good rates of satisfaction or acceptance. Some economic studies suggested that digital clinical communication may save costs.
Conclusions:
This rapid review showed an emerging body of literature on the use of digital clinical communication to improve families' and caregivers' involvement in the health management of children or young people. Further research with appropriate study designs and longer-term outcome measures should be encouraged.
Trial registration:
PROSPERO CRD42016035467; http://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD 42016 035467(Archived by WebCite at http://www.webcitation.org/6vpgZU1FU).
... Many Nations lack the physical infrastructure to house Jordan's Principle services and provide a comprehensive hub of Nation-designed and delivered care for families whose children have dis/abilities, complex and or chronic conditions. There is also a need for digital infrastructure to foster continuity in relationships and coordination and continuity of care, particularly in remote and northern Nations where year-round physical access can be challenging (Hanlon-Dearman et al., 2014). Addressing these infrastructure challenges will require coordinated efforts that allow for the collective creation of knowledge about the needs within Nations and sharing of the technical expertise required to address these needs. ...
Jordan’s Principle is a legal requirement for the Canadian government to address gaps in services for First Nations children and ensure timely services that meet their needs and best interests. This article synthesizes and discusses some of the key research findings described in a report on the implementation of Jordan’s Principle in Manitoba, produced by a team of academic researchers in partnership with the Assembly of Manitoba Chiefs. Findings provide insights into a relational approach to the implementation of Jordan’s Principle and inter-related structural factors that constrain the efficacy of this approach. Findings reinforce the need for First Nations–led processes and Jordan’s Principle policies that fully fund and support First Nations in addressing high caseloads and growing waiting lists, complex responsibilities, stress and staff turnover, administrative burden, and inadequate physical and digital infrastructure. Sufficient resources for First Nations capacity enhancement initiatives and regional coordination and support are also identified priorities.
... Pradhan and Six-Workman discussed a telehealth model for integrated mental health services in a rural school-based health clinic for the vulnerable youth, and described barriers, challenges, and efficient use of resources [15]. Three past studies explored "the viability, effectiveness, and experiences of telehealth programs specific to FASD" and evaluated the FASD Telehealth program within two rural and remote Manitoba communities [16][17][18]. Challenges around technology, such as picture clarity and consistent, reliable connectivity between the patient and medical team were identified, as well as the need of further research to understand the perspectives of individuals and families who accessed the services through telehealth. None of these studies completed all aspects of the FASD assessment and diagnostic processes using a virtual model but other studies have used virtual methods reliably for specific assessments. ...
The diagnostic process for fetal alcohol spectrum disorder (FASD) involves a multi-disciplinary team and includes neurodevelopmental, physical, and facial assessments and evidence of prenatal alcohol exposure during the index pregnancy. With the increased use of virtual care in health care due to the pandemic, and desire of clinics to be more efficient when providing timely services, there was a need to develop a virtual diagnostic model for FASD. This study develops a virtual model for the entire FASD assessment and diagnostic process, including individual neurodevelopmental assessments. It proposes a virtual model for assessment and diagnosis of FASD in children and evaluates the functionality of this model with other national and international FASD diagnostic teams and caregivers of children being assessed for FASD.
... Current, ongoing developments may be promising; many hope that advances in Web-based technology can make screening and diagnosis more accessible. For example, telehealth has successfully been used for FASD assessment in rural and remote communities in Manitoba since 2000 (Hanlon-Dearman et al., 2014). Computer-based facial recognition software has been shown to have high diagnostic accuracy for detecting ARND, perhaps even higher than standard, manual assessment methods (Valentine et al., 2017). ...
In this issue of Alcoholism: Clinical and Experimental Research, three additional papers examining the prevalence of fetal alcohol spectrum disorders (FASD) (May et al., 2020; May et al., 2020; May et al., 2020) follow the earlier paper by Chambers et al. (2019). These studies present state‐of‐the‐art Fetal Alcohol Spectrum Disorder (FASD) active case ascertainment of prevalence among school‐age children conducted in the United States and demonstrate the importance of the behind‐the‐scenes intensive fieldwork necessary to complete studies of this size in community settings.
... Rather than a separate form of intervention, spending time in community and having relationships in place is a key factor in the success of using the available technology as a complement to existing services(Eriks-Brophy, Quittenbaum, Anderson, & Nelson, 2008). diagnosed with FASD indicates that diagnostic assessments and followup can be undertaken remotely in partnership with community stakeholders as part of an integrated model of service delivery(Ens, Hanlon-Dearman, Cox Millar, & Longstaffe, 2010;Hanlon- Dearman, Edwards, Schwab, Cox Millar, & Langstaffe, 2014).Molyneaux & O'Donnell, 2009). Telerehabilitation can also be used to support and enhance education and professional development for community stakeholders and coaching for family members(CASLPA, 2010;Eriks-Brophy et al., 2008). ...
Background
Fetal alcohol spectrum disorder (FASD) is a common developmental disability that requires lifelong and ongoing support but is often difficult to find due to the lack of trained professionals, funding, and support available. Technology could provide cost-effective, accessible, and effective support to those living with FASD and their caregivers.
Objective
In this review, we aimed to explore the use of technology available for supporting people living with FASD and their caregivers.
Methods
We conducted a scoping review to identify studies that included technology for people with FASD or their caregivers; focused on FASD; used an empirical study design; were published since 2005; and used technology for assessment, diagnosis, monitoring, or support for people with FASD. We searched MEDLINE, Web of Science, Scopus, Embase, APA PsycINFO, ACM Digital Library, JMIR Publications journals, the Cochrane Library, EBSCOhost, IEEE, study references, and gray literature to find studies. Searches were conducted in November 2022 and updated in January 2024. Two reviewers (CZC and HW) independently completed study selection and data extraction.
Results
In total, 17 studies exploring technology available for people with FASD showed that technology could be effective at teaching skills, supporting caregivers, and helping people with FASD develop skills.
Conclusions
Technology could provide support for people affected by FASD; however, currently there is limited technology available, and the potential benefits are largely unexplored.
Objective
Telehealth has for many years been identified as a potential contributor to reducing healthcare access inequality. For these benefits to be realised, patients must be accepting and satisfied with the delivery of healthcare in this manner. Measuring patient satisfaction across a large geographical area is important to ensure that investments in telehealth are delivering the benefits that are intended.MethodsA brief survey was automatically issued on completion of a patient's telehealth appointment, requesting patient feedback on their experience and information on the location of where they participated in the appointment. These results were compared to an article review which sought examples of other patient satisfaction measures that compared rural and urban populations.ResultsNo significant correlations between survey responses and established demographic indices were found. When stratified by the Modified Monash Model band from which the patient participated in their telehealth appointment from, an ANOVA test determined that rurality was not a predictor of survey response. A review of articles found four articles that compared rural and urban satisfaction responses.Conclusion
No evidence of a patient's location influencing their satisfaction with telehealth was observed. This may be attributed to a variety of technical improvements introduced over the past 5-10 years that have made participating in telehealth appointments less technically demanding and more accessible. Telehealth is likely to be contributing to a reduction in healthcare access inequality in Queensland.
Neste capítulo, aborda-se o tema “Tecnologia Digital em Saúde” com foco no
desenvolvimento e utilização do aplicativo “InfoSaúde” como medidas de controle e
prevenção adotadas na Pandemia do COVID-19.
In recent years, and especially due to COVID-19, a large number of telehealth interventions have been implemented. The large amount of information requires a differential analysis with an emphasis on rurality and the practice of parents/caregivers in the care and attention of children. The objectives of this study were to synthesize the available evidence on telehealth interventions aimed at parents and caregivers of children living in rural settings, and to identify relevant methodological aspects that are considered in such interventions. A systematic review was conducted in the Medline (Ovid), Embase, Scopus, APA-PSYCNET, Web of Science and LILACS databases. Studies published between 2000 and 2020 were considered. A narrative synthesis of the main results of the studies was performed, including basic characteristics, details of the interventions, and the main outcome measures. The quality of the studies included was assessed using the Joanna Briggs Institute Critical Appraisal tools. A total of 596 potential studies were identified, of which only nine were included. Quality assessment was consistent in all nine studies. Parents and caregivers of children with speech and language impairment, motor impairment or problems in performing activities of daily living, with behavior problems, and with autism spectrum disorder were the main populations groups benefiting from the interventions. Telehealth interventions were implemented by means of online sessions, pre-recorded sessions and self-learning modules, among others. Results, although variable, evidence positive outcomes regarding the development of multiple skills in children, their parents and family members, as well as the opportunity to provide timely access to health services. Finally, Telehealth is increasingly becoming a useful tool to provide counsel and knowledge to parents and caregivers living in rural areas that will enable them to properly manage health problems.
Introduction:
Genome-wide sequencing (exome or whole genome) is transforming the care and management of paediatric patients with a rare disease because of its diagnostic capabilities. Genome-wide sequencing is most effective when both parents and the child are sequenced as a trio. Genetic counselling is recommended for all families considering genome-wide sequencing. Although telehealth is well established in genetic counselling for hereditary cancer and prenatal genetics, its use with genome-wide sequencing has not been well studied. The CAUSES Clinic at BC Children's and Women's Hospitals was a translational paediatric trio-based genome-wide sequencing initiative. Pre-test genetic counselling via telehealth (at a clinical site near the family's residence) was offered to families who had been previously evaluated by a clinical geneticist. We report on the first 300 families seen in the CAUSES clinic and compare health services implementation issues of families seen via telehealth versus on-site.
Methods:
Demographics, cost to families (travel and time), time to first appointment, complete trio sample accrual and diagnostic rates were studied.
Results:
Of the 300 patients, 58 (19%) were seen via telehealth and 242 (81%) were seen on-site for pre-test counselling. The mean time to completion of accrual of trio samples in the telehealth group was 56.3 (standard deviation ±87.3) days versus 18.9 (standard deviation ±62.4) days in the onsite group (p < 2.2 × 10-16). The mean per-family estimated actual or potential travel/time cost savings were greater in the telehealth group (Can1151) than for those seen on-site (Can589) (p = 0.0004).
Conclusions:
Telehealth allowed for access to genome-wide sequencing for families in remote communities and for them to avoid significant travel and time costs; however, there was a significant delay to accrual of the complete trio samples in the telehealth group, impacting on time of result reporting and delaying diagnoses for families for whom genome-wide sequencing was diagnostic.
Background
Young people (aged 16–24 years) with long-term health conditions tend to disengage from health services, resulting in poor health outcomes. They are prolific users of digital communications. Innovative UK NHS clinicians use digital communication with these young people. The NHS plans to use digital communication with patients more widely.
Objectives
To explore how health-care engagement can be improved using digital clinical communication (DCC); understand effects, impacts, costs and necessary safeguards; and provide critical analysis of its use, monitoring and evaluation.
Design
Observational mixed-methods case studies; systematic scoping literature reviews; assessment of patient-reported outcome measures (PROMs); public and patient involvement; and consensus development through focus groups.
Setting
Twenty NHS specialist clinical teams from across England and Wales, providing care for 13 different long-term physical or mental health conditions.
Participants
One hundred and sixty-five young people aged 16–24 years living with a long-term health condition; 13 parents; 173 clinical team members; and 16 information governance specialists.
Interventions
Clinical teams and young people variously used mobile phone calls, text messages, e-mail and voice over internet protocol.
Main outcome measures
Empirical work – thematic and ethical analysis of qualitative data; annual direct costs; did not attend, accident and emergency attendance and hospital admission rates plus clinic-specific clinical outcomes. Scoping reviews–patient, health professional and service delivery outcomes and technical problems. PROMs: scale validity, relevance and credibility.
Data sources
Observation, interview, structured survey, routinely collected data, focus groups and peer-reviewed publications.
Results
Digital communication enables access for young people to the right clinician when it makes a difference for managing their health condition. This is valued as additional to traditional clinic appointments. This access challenges the nature and boundaries of therapeutic relationships, but can improve them, increase patient empowerment and enhance activation. Risks include increased dependence on clinicians, inadvertent disclosure of confidential information and communication failures, but clinicians and young people mitigate these risks. Workload increases and the main cost is staff time. Clinical teams had not evaluated the impact of their intervention and analysis of routinely collected data did not identify any impact. There are no currently used generic outcome measures, but the Patient Activation Measure and the Physicians’ Humanistic Behaviours Questionnaire are promising. Scoping reviews suggest DCC is acceptable to young people, but with no clear evidence of benefit except for mental health.
Limitations
Qualitative data were mostly from clinician enthusiasts. No interviews were achieved with young people who do not attend clinics. Clinicians struggled to estimate workload. Only eight full sets of routine data were available.
Conclusions
Timely DCC is perceived as making a difference to health care and health outcomes for young people with long-term conditions, but this is not supported by evidence that measures health outcomes. Such communication is challenging and costly to provide, but valued by young people.
Future work
Future development should distinguish digital communication replacing traditional clinic appointments and additional timely communication. Evaluation is needed that uses relevant generic outcomes.
Study registration
Two of the reviews in this study are registered as PROSPERO CRD42016035467 and CRD42016038792.
Funding
The National Institute for Health Research Health Services and Delivery Research programme.
Introduction:
The effectiveness of any new technology is typically measured in order to determine whether it successfully achieves equal or superior objectives over what is currently offered. Research in telemental health-in this article mainly referring to telepsychiatry and psychological services-has advanced rapidly since 2003, and a new effectiveness review is needed.
Materials and methods:
The authors reviewed the published literature to synthesize information on what is and what is not effective related to telemental health. Terms for the search included, but were not limited to, telepsychiatry, effectiveness, mental health, e-health, videoconferencing, telemedicine, cost, access, and international.
Results:
Telemental health is effective for diagnosis and assessment across many populations (adult, child, geriatric, and ethnic) and for disorders in many settings (emergency, home health) and appears to be comparable to in-person care. In addition, this review has identified new models of care (i.e., collaborative care, asynchronous, mobile) with equally positive outcomes.
Conclusions:
Telemental health is effective and increases access to care. Future directions suggest the need for more research on service models, specific disorders, the issues relevant to culture and language, and cost.
Qualitative methods are now widely used and increasingly accepted in health research, but quality in qualitative research is a mystery to many health services researchers. There is considerable debate over the nature of the knowledge produced by such methods and how such research should be judged. Antirealists argue that qualitative and quantitative research are very different and that it is not possible to judge qualitative research by using conventional criteria such as reliability, validity, and generalisability. Quality in qualitative research can be assessed with the same broad concepts of validity and relevance used for quantitative research, but these need to be operationalised differently to take into account the distinctive goals of qualitative research.
Telehealth has been used for fetal alcohol spectrum disorder (FASD) diagnostic assessment in select Manitoban communities since 2000.
The purpose of this study was to evaluate the FASD telehealth program within two rural and remote Northern Manitoban communities by comparing community practices from the perspective of professionals working with the FASD diagnostic clinics in these communities. Recommendations for the further development of FASD assessment by telehealth were made to further improve current implementation and guide expansion of the FASD telehealth program within the province.
Semistructured interviews were conducted from October 19 to December 11, 2009. Participants (N = 26) were comprised of professionals, including those in the education, social services, and health sectors.
Two themes emerged from the data and covered the perceived strengths and drawbacks with the program, and meaningful suggestions to improve the service. Participants regarded the FASD telehealth program as successful and useful, especially given the remote location of the communities and the lack of on-site services. Recommendations addressing the barriers pertaining to the process were made from the study's findings and available scientific literature.
This study will provide a solid basis for the successful further development of the FASD telehealth programs.
The diagnosis of fetal alcohol syndrome has been possible, with increasing precision, since the original descriptions in the 1970s. Multidisciplinary diagnostic approaches have been recognized as most appropriate, although they are often not available. Telemedicine has been used in Canada over the same time period for a variety of diagnositc applications.
Since 1999, funding by the Manitoba government has allowed the consolidation of services for children with prenatal alcohol exposure in Manitoba, and has allowed the development of a format for diagnosis using telemedicine.
This paper describes the authors' experience with the above and offers observations that may be helpful to other programs that are focused on developing this format for the diagnosis of fetal alcohol syndrome.
The growth in qualitative research is a well-noted and welcomed fact within the social sciences; however, there is a regrettable lack of tools available for the analysis of qualitative material. There is a need for greater disclosure in qualitative analysis, and for more sophisticated tools to facilitate such analyses. This article details a technique for conducting thematic analysis of qualitative material, presenting a step-by-step guide of the analytic process, with the aid of an empirical example. The analytic method presented employs established, well-known techniques; the article proposes that thematic analyses can be usefully aided by and presented as thematic networks. Thematic networks are web-like illustrations that summarize the main themes constituting a piece of text. The thematic networks technique is a robust and highly sensitive tool for the systematization and presentation of qualitative analyses.
The authors draw on their experience with the University of California, San Diego Medical Center's successful enterprise-level clinical telemedicine program to present a paradigm for other academic health centers (AHCs) that wish to develop such a program. They detail key telemedicine program elements, or "tele-ments," that they consider essential to the development of a centralized, structured telemedicine program and relevant to the development of smaller programs. These tele-ments include an overall organizational vision, a centralized telemedicine infrastructure, telemedicine-specific policies and procedures, medical record documentation, relationships between the AHC clinical hub and its remote (spoke) partners, identification of and training for specialty providers, a business plan based on service agreements and/or insurance billing, and licensure/privileging. They discuss the importance of delaying equipment purchases until a plan is in place for sustaining the telemedicine enterprise and of establishing measures to define success at the outset of program development. In addition, they detail the benefits and concerns associated with telemedicine, provide a comprehensive listing of the roles and responsibilities of providers and staff involved in all aspects of telemedicine, and share samples of their program's informed consent forms and workflow checklists. Their goal is to offer support and guidance to other AHCs entering the telemedicine arena, enabling them to replicate key elements of a successful, enterprise-wide telemedicine infrastructure.
A disproportionately large number of youth and adults with fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE) seem to be coming into conflict with the legal system. Learning and behavioral difficulties associated with FAS/FAE may make them more susceptible to criminal behavior. This study determined the prevalence of FAS/FAE among youth who were remanded for a forensic psychiatric/psychological assessment. All youth remanded to a forensic psychiatric inpatient assessment unit over a 1-year period were evaluated for FAS/FAE. Of the 287 youth, 67 (23.3%) had an alcohol-related diagnosis: 3 (1.0%) had a diagnosis of FAS and 64 (22.3%) had a diagnosis of FAE. Thus, this group is disproportionately represented in the juvenile justice system, indicating the need for increased education and awareness among those in the criminal justice system involved with these youth.
The aim of this study was to describe the 'lived' experiences of New Zealand birth mothers, from pregnancy onwards, of a child/ren diagnosed with Fetal Alcohol Spectrum Disorder (FASD).
A qualitative paradigm was utilized so that the participants could tell their stories through words and text rather than collecting statistical data which is the domain of quantitative research. The adoption of a feminist standpoint theory bridged a communication gap, adjusted the balance of power within society and gave visibility and voice to the women. Eight New Zealand-resident multipara biological mothers ages 18 and over, who had nurtured or were still living with their affected offspring, were studied. Their ages ranged from 29 to 64. The mothers were interviewed in depth, face-to-face, using unstructured, open-ended questions. Data were analyzed using the constant comparative method.
The mothers described a range of issues of concern for their disabled offspring and themselves (as advocates) relating to health, social, educational, judicial systems, lack of knowledge by professionals and problems in diagnosis, to being oppressed and stigmatized. Cognitive concerns for the offspring included attention-deficit, absence of fear, diminished memory and comprehension and inability to acknowledge and understand consequences. Behavioural issues included excessive crying or no crying as a baby, lying, stealing, hyper-activity, aggressiveness, destructiveness, sexual promiscuity and few friends. Other issues of concern were delayed milestones and numerous health problems. All mothers stated that the pregnancy, labour and delivery of their child with FASD were different from their other non-compromised pregnancies/labours/deliveries. Most mothers said that the doctors used medical language which they did not understand, thus giving power to the former. Seven mothers were either married to or partners of alcoholics when they conceived their offspring with FASD. All mothers had been drinking alcohol before becoming pregnant. Six mothers came from drinking families. Most mothers continued to consume alcohol because they did not know that they had conceived. All mothers were unaware of FASD and its effects on the unborn child. Eight babies had low Apgar scores with an average of 6 (out of 10) and low birth weight (average 6lb 2oz). An Apgar score is a numerical expression of an infant's condition, usually determined at 60 seconds after birth, based on heart rate, respiratory efforts, muscle tone, reflex irritability and colour. All women were of middle to high socio-economic status. Seven mothers experienced family breakdown as a result of alcohol consumption by the biological father of the child with FASD. All women feared for their child's future.
Health, social, educational, judicial professionals, policy-makers and agencies, need to understand and be educated in the daily realities and complex problems that children with FASD and their families face. Only then will the correct diagnosis be made so that these individuals can receive the nurturing, needs, education, funding and support they require in order to live full and meaningful lives and have the quality of life they deserve.
Fetal alcohol syndrome and fetal alcohol spectrum disorder are common problems. In response to this problem the Canada Northwest FASD Research Network was established in 2005 by the Canada Northwest FASD Ministerial Partnership. This study was conducted to determine the FASD clinical activity in Canada Northwest.
The Network identified all clinical programs via Internet sites, provincial postings and professional word of mouth references that purported to do FASD assessments regularly using a multidisciplinary assessment team. Each of these programs was sent a questionnaire asking about clinical capacity, aggregate diagnostic results, team composition, time of clinical assessment and cost of assessment.
Of the 27 programs identified to receive the questionnaire 15 programs responded. These programs were determined to have evaluated about 85% of the patients evaluated by all the programs. The total 7 jurisdictional capacity for FASD diagnosis was 816 evaluations in 2005 and projected to be 975 in 2006. Selection methods for appointing patients for assessment seemed excellent as 23% of those assessed were found to have FAS or pFAS and another 44% had other forms of FASD. The most common professionals to participate in the team evaluations were Paediatricians, Clinical Psychologists, Speech and Language Pathologists and Occupational Therapists.
Clinics are developing in western and northern Canada to diagnose patients with FASD. Comparing the experiences of these clinics can help to determine the continued need to increase diagnostic capacity, standardize diagnostic approaches to assure consistency of approach and diagnosis across the sites and appropriately staff and fund the programs. Key words: FASD; diagnosis; Canada; clinics.
Justice for young offenders: Their needs, our responses
- M Vandergroot
Vandergroot, M. Justice for young offenders: Their needs, our responses. Saskatoon, SK: Purich Publishing Ltd., 2006.
Alcohol use during pregnancy in Manitoba: Results from a population based screening tool
- H Gammon
Gammon H, et al. Alcohol use during pregnancy in Manitoba: Results from a population based screening tool. Presented at the 5th International Conference on Fetal Alcohol Spectrum Disorder, Vancouver, BC, Canada, February 27, 2013.