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Challenges and Strengths Experienced by Fetal Alcohol Spectrum Disorder Diagnostic Clinics in Canada

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Title: Challenges and Strengths Experienced by Fetal Alcohol Spectrum Disorder Diagnostic Clinics in Canada
Language: English
Authors: Kelly D. Harding (ORCID 0000-0001-8996-8058), Colleen Burns, Christine Lafontaine, Andrew Wrath, Alicia Groom, Katherine Flannigan, Kathy Unsworth, Audrey McFarlane
Source: Journal of Intellectual & Developmental Disability. 2024 49(3):331-341.
Availability: Taylor & Francis. Available from: Taylor & Francis, Ltd. 530 Walnut Street Suite 850, Philadelphia, PA 19106. Tel: 800-354-1420; Tel: 215-625-8900; Fax: 215-207-0050; Web site: http://www.tandf.co.uk/journals
Peer Reviewed: Y
Page Count: 11
Publication Date: 2024
Document Type: Journal Articles
Reports - Research
Tests/Questionnaires
Descriptors: Foreign Countries, Fetal Alcohol Syndrome, Clinical Diagnosis, Barriers, Affordances, Clinics, Human Resources, Cultural Relevance, Interpersonal Relationship
Geographic Terms: Canada
DOI: 10.3109/13668250.2023.2293336
ISSN: 1366-8250
1469-9532
Abstract: Background: The Canadian fetal alcohol spectrum disorder (FASD) diagnostic guideline provides clinicians with the process and procedure to reach an accurate diagnosis. However, organisational structure, culture, and resource utilisation vary. The objectives of this study were to identify the key challenges and strengths of successful FASD diagnostic clinics. Method: Qualitative interviews were conducted with 12 key informants from 10 clinics representing different regions, populations served, and clinic structures. Data analysis was performed using iterative thematic inquiry. Results: Three themes related to challenges and four themes related to strengths were identified. Human resources were identified as both a challenge and strength. Additional challenges were diagnostic capacity and system level support. Additional strengths were clinic adaptability, relational connections, and culturally responsive approaches. Conclusions: FASD clinics are more alike than not in their approach to assessment and diagnosis. Some clinics are facing similar challenges that others have overcome, supporting the need for mentorship and consistent operating standards.
Abstractor: As Provided
Entry Date: 2024
Accession Number: EJ1435544
Database: ERIC
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  Value: <anid>AN0179022554;ddi01sep.24;2024Aug19.05:25;v2.2.500</anid> <title id="AN0179022554-1">Challenges and strengths experienced by fetal alcohol spectrum disorder diagnostic clinics in Canada </title> <p>Background: The Canadian fetal alcohol spectrum disorder (FASD) diagnostic guideline provides clinicians with the process and procedure to reach an accurate diagnosis. However, organisational structure, culture, and resource utilisation vary. The objectives of this study were to identify the key challenges and strengths of successful FASD diagnostic clinics. Method: Qualitative interviews were conducted with 12 key informants from 10 clinics representing different regions, populations served, and clinic structures. Data analysis was performed using iterative thematic inquiry. Results: Three themes related to challenges and four themes related to strengths were identified. Human resources were identified as both a challenge and strength. Additional challenges were diagnostic capacity and system level support. Additional strengths were clinic adaptability, relational connections, and culturally responsive approaches. Conclusions: FASD clinics are more alike than not in their approach to assessment and diagnosis. Some clinics are facing similar challenges that others have overcome, supporting the need for mentorship and consistent operating standards.</p> <p>Keywords: Intellectual disability; fetal alcohol spectrum disorder; diagnosis; assessment; qualitative</p> <p>Fetal alcohol spectrum disorder (FASD) is a diagnostic term used to describe the lifelong impacts on the brain and body of individuals prenatally exposed to alcohol (Harding et al., [<reflink idref="bib11" id="ref1">11</reflink>]). FASD is one of the most common neurodevelopmental disorders in Canada, impacting an estimated 4% of the population (Popova et al., [<reflink idref="bib23" id="ref2">23</reflink>]; Thanh et al., [<reflink idref="bib29" id="ref3">29</reflink>]). Individuals with FASD experience marked and lifelong challenges in physical, cognitive, social-emotional, and behavioural functioning (Mattson et al., [<reflink idref="bib15" id="ref4">15</reflink>]). Difficulties in adaptive and everyday living are also common for people with FASD, including problems with school and employment, independence and housing, parenting, legal involvement, and mental health and substance use (McLachlan et al., [<reflink idref="bib16" id="ref5">16</reflink>]; Streissguth et al., [<reflink idref="bib26" id="ref6">26</reflink>]). Importantly, early identification of FASD and appropriate intervention responses are known to protect against many of the adverse life outcomes associated with FASD (Streissguth et al., [<reflink idref="bib26" id="ref7">26</reflink>]). To date, there are more than 75 clinics across Canada providing assessment and diagnostic services for individuals with FASD in nearly all provinces and territories (Canada FASD Research Network, [<reflink idref="bib1" id="ref8">1</reflink>]; Dugas et al., [<reflink idref="bib5" id="ref9">5</reflink>]). This number continues to grow in response to the ongoing need for FASD clinical services. The locations of FASD clinics in Canada range from busy urban centres to remote communities, serving clients across the lifespan from early childhood to adulthood.</p> <p>Each clinic is shaped by a variety of factors, such as their region of service (e.g., urban, rural, remote), clinic oversight (e.g., government, health authority, not-for profit, and private), method of service delivery (e.g., in-person, mobile clinic, telehealth, and hybrid), team composition and access to clinicians, involvement of community stakeholders, and sustainability of funding (Green, [<reflink idref="bib10" id="ref10">10</reflink>]). Regardless of clinics' scope of service, there are several elements of best practice that are important for all clinics to consider, particularly regarding screening, referral, and intake for assessment, information-gathering and medical examination, multidisciplinary neurodevelopmental assessment, diagnosis and recommendations, and debrief and follow-up with individuals and families (Cook et al., [<reflink idref="bib4" id="ref11">4</reflink>]; Green, [<reflink idref="bib10" id="ref12">10</reflink>]).</p> <p>Ample research has been conducted on the benefits and impacts of formal FASD assessment and diagnosis. For example, FASD assessment and diagnostic services have been associated with reduced psychological trauma, individualised treatment planning for lifelong supports, increased access to appropriate services and supports, mental health education, and support for the entire family (Dugas et al., [<reflink idref="bib5" id="ref13">5</reflink>]; Helgesson et al., [<reflink idref="bib12" id="ref14">12</reflink>]; Whittingham & Coons-Harding, [<reflink idref="bib30" id="ref15">30</reflink>]). Despite this preliminary work, limited research has been conducted on the experiences of FASD diagnostic staff and clinicians. To the authors' knowledge, no research to date has focused on the challenges and strengths of FASD diagnostic clinicians themselves in Canada or elsewhere.</p> <hd id="AN0179022554-2">Current study</hd> <p>This study was part of a larger research project developed to better understand the breadth of FASD diagnostic service models in Canada. The purpose of this larger project was to identify the key components needed for establishing and operating a sustainable FASD diagnostic clinic, and potential challenges to the development and ongoing implementation of accessible FASD diagnostic services. The current study was undertaken to document the challenges and successes of existing FASD diagnostic clinicians to inform recommendations for policymakers and service providers who may be interested in establishing new diagnostic clinics in Canada.</p> <hd id="AN0179022554-3">Methods</hd> <p></p> <hd id="AN0179022554-4">Recruitment and participants</hd> <p>In collaboration with a representative (CB) from our community partner who is well connected to many FASD diagnostic clinics in Canada as a training facilitator, we utilised purposive sampling to generate a list of 11 FASD diagnostic clinics to interview. Clinics were strategically identified to ensure representation from a diverse range of clinic structures (e.g., regional health agency, education/organisation, community-based, and not-for-profit), client demographics (e.g., paediatric, adult, and lifespan), as well as unique populations (e.g., multicultural clinic settings including Innu, Inuit, Métis, and francophone populations, justice-involved individuals) and geographic regions (e.g., Northern Canada, Western Canada, Central Canada, and Atlantic Canada). A formal invitation letter was sent by email to potential key informants identified at each clinic. One clinic did not respond to our request for participation.</p> <p>Ultimately, 12 key informants participated in this study, representing 10 diagnostic clinics in Canada. The key informants had primary roles as program managers, clinic coordinators, and/or core clinical team members. Five clinics were strictly paediatric, four clinics served both children and adults, and one clinic served strictly adults. Many participating clinics were long-standing and provincially or territorially centred, making them leading examples who were able to speak to the historical context and evolution of FASD diagnostic clinic practices over time.</p> <hd id="AN0179022554-5">Qualitative interviews</hd> <p>Informed by a pragmatist epistemology (Kelly & Cordeiro, [<reflink idref="bib13" id="ref16">13</reflink>]), we conducted a basic interpretive qualitative study (Merriam & Tisdell, [<reflink idref="bib17" id="ref17">17</reflink>]) utilising semi-structured interviews. Based on our previous experiences as researchers, clinicians, and frontline service providers, and with consideration of the intended research, practice, and policy implications for this work, 10 open-ended questions were developed (see the Appendix). Ten interviews were conducted by the principal investigator (KH), supported by the community partner (CB), between January and March 2021. Interviews were conducted virtually over Zoom and lasted between 60 and 90 min. All interviews were recorded and transcribed verbatim for data analysis.</p> <hd id="AN0179022554-6">Data analysis</hd> <p>In line with our pragmatic approach, data in this study were analysed using Morgan and Nica's iterative thematic inquiry (ITI; Morgan & Nica, [<reflink idref="bib18" id="ref18">18</reflink>]). ITI represents a relatively new method for the analysis of qualitative data based on a search for themes that begins in the data analysis process, and continues throughout the entire research study (Morgan & Nica, [<reflink idref="bib18" id="ref19">18</reflink>]). ITI emphasises the problem-solving process of working with a set of themes to address the original research questions, iteratively creating these themes based on actions that continue to inform theme generation until a final set of themes are derived.</p> <p>To conduct our analysis, we followed the four basic phases of ITI outlined by Morgan and Nica, which include: (<reflink idref="bib1" id="ref20">1</reflink>) assessing initial beliefs as themes; (<reflink idref="bib2" id="ref21">2</reflink>) building new beliefs during data collection; (<reflink idref="bib3" id="ref22">3</reflink>) listing tentative themes; and (<reflink idref="bib4" id="ref23">4</reflink>) evaluating themes through coding (Morgan & Nica, [<reflink idref="bib18" id="ref24">18</reflink>]). The ITI process begins with a set of preconceptions that the researchers bring to the research topic, which are continually updated throughout the data analysis process. As such, we acknowledge our active role as researchers in this iterative process of deriving the final themes presented here, including our construction of the interview guide and our preconceived beliefs about our expected findings based on our diverse backgrounds and experiences. Therefore, our iterative process included alternating between data collection and data analysis to ensure our continual engagement with our research team's beliefs about the research topic and questions and to provide space for co-construction of our beliefs together as a team. We also iterated on our theme generation via feedback discussions with participants who provided thoughts on their initial interview transcripts and our revised themes.</p> <hd id="AN0179022554-7">Ethical considerations</hd> <p>Ethical approval for this study was received from the Laurentian University Research Ethics Board (REB #6020878). Written informed consent was obtained from all participants. To ensure anonymity and confidentiality, all identifying information has been removed.</p> <hd id="AN0179022554-8">Results</hd> <p>Analysis derived seven themes. Themes were organised in line with our two areas of interest: challenges (three themes) and strengths (four themes).</p> <hd id="AN0179022554-9">Challenges</hd> <p></p> <hd id="AN0179022554-10">Diagnostic capacity</hd> <p>Participants noted that diagnostic capacity was impacted by a multitude of intersecting factors including financial support, clinician availability, and adequately trained professionals. Participants perceived that their diagnostic capacity was limited by the number of assessments they were able to conduct in a year, which varied depending on the clinic, ranging from 10 to 250 assessments per year, and sometimes included an allotment for specific types of assessment (e.g., justice-involved, private fee for service). Participants spoke about continuous pressure from the community to conduct more assessments, both in terms of overall number of clients, and in terms of expanding their service reach. As one participant noted, " ... we have to somehow meet the demand for diagnostic services." In other instances, participants described the opposite problem of having difficulty reaching enough clients in their area, particularly for preschool-aged children, which participants noted might be driven by geography, human resources, and stigma regarding FASD.</p> <p>While participants recognised that they could only do so much with their current resources, they also discussed frustrations with not being able to do more. As one participant noted:</p> <p>If you say that there's 3% of the population [that] is affected by this condition ... it's thousands and thousands of people that are affected and we have diagnostic capacity in [our region] for 10 [assessments] and in [another region of the province] ... we've got [capacity for the assessment of] 20 people. What are you talking about? 20 or 30 people and you have thousands that need the services – how could you do that?</p> <p>Beyond their challenge with limited resources for FASD assessments, participants also described capacity challenges including location – particularly rurality – and the demand on individuals and families to travel to access services. In addition, many participants reported that these capacity challenges led to long waitlists. One participant stated that their waitlist was getting "very high, alarmingly high." Participants shared their dismay at making individuals and families wait for much needed and timely services. As one participant said, "A 7-year-old doesn't have two years to wait to be diagnosed." Another participant shared a similar sentiment, noting that although their clinic had improved their waitlist overall, "it's still unacceptable for a family that's struggling to wait that long" for an assessment. Unsurprisingly, participants described that capacity, wait time, and waitlist challenges were driven by a lack of system level supports and resources, particularly financial support.</p> <hd id="AN0179022554-11">System level support</hd> <p>Directly impacting diagnostic capacity was perceived challenges with external system level supports, particularly funding and stakeholder and government interest and support. Several participants noted the perceived lack of interest by some provincial and federal governments in supporting FASD assessment and diagnostic services. As one participant reflected:</p> <p>I think we need to have more uptake provincially for more buy in .... From the top down, do I really feel that they looked at this clinic as something [important]? ... [We are the] only one doing it [in our region] and not much credit was given to [us] – and not to say that we needed credit, we didn't want a pat on the back – but we wanted recognition that the work we're doing was valuable and when you don't feel that value in your work, what happens?</p> <p>This example speaks to the concern many participants felt that FASD assessment and diagnosis was not viewed as an important concern in their regions, and that the hard work clinic teams invested was not recognised by many stakeholders, including the government and the larger community. Some participants shared that there was a perception in their communities that FASD assessment and diagnosis was not worthwhile, and that clinics faced a constant need to educate and advocate for the advantages of diagnosis. For example, one participant described that the Health Minister in their province told them that "it was a waste of time ... to work with adults with FASD because there isn't anything you can do for them, and they all get diagnosed when they're kids," highlighting both the lack of awareness for needed and continuous FASD-informed supports across the lifespan, and the misperception that FASD supports should only be delivered to children.</p> <p>Participants described funding as one of the most important challenges with respect to system level support. Regardless of how clinics were funded (e.g., by regional health authorities, by project funding, etc.), all participants felt that funding was a concern for stability, as well as for expanding services to reduce waitlists. When asked about current challenges, one participant stated, "Money. We haven't had an increase in funding since 2014 so we are very limited in the number of assessments we can manage in a year. We could do more if we had more funding." Some clinics further spoke to the challenges of dividing up provincial funding for assessment and diagnostic services because of the large disbursement of their regions. As one participant described, their "province is too big," making some clinics feel as though financial resources were often allocated elsewhere to more heavily populated areas (i.e., major cities), neglecting rural and remote communities.</p> <p>This perceived lack of system level support also included limited interest from the federal government in supporting First Nations and Indigenous peoples specifically. As one participant shared:</p> <p>Well, [many] families ... have a connection to trauma, a family history of isolation and trauma. Residential schooling is often present .... You can just see the line that goes through like addiction ... you would see more change if there was more family support but it's very hard to get funding for family support because the government doesn't see it, the feds – they tend to see these things divided. ... So social work is social work, ... diagnosis is medical, and school is school and it's provincial, these are all provincial kinds of things. And so, it's really hard to get moving and to get Indigenous services or the federal government to recognize [it].</p> <p>Even participants from well-established clinics with consistent, stable funding described the precarious nature of their work. As one participant shared, "we survive with the funding of ministries," while another described that their clinic operation is "a constant bit of a hamster wheel ... It's never a 'for sure'."</p> <hd id="AN0179022554-12">Human resources</hd> <p>The last theme participants described was on-going challenges with human resources (HR). Although all participants were passionate about the work they do, many spoke about how "everybody wants to have a piece of us." Participants described feeling as though they constantly needed to fight to survive, and subsequently reported experiences of burnout within the clinic team. Leaders at the clinic discussed their exhaustion regarding the constant need to not only educate others about FASD, but also to fight for appropriate access to funding, services, and coordinated care. They also described the HR demands related to needing to search and apply for grants out of a fear of insufficient resources. As one participant said:</p> <p>Yes, we can write lots of grants but when there's only [the two of us], we need more staff to be able to do that. It's this dog chasing its tail ... we've got all these incredible things that we're doing, but where's the transition plan? Where's the sustainability?</p> <p>These demands increased concerns regarding the time and expertise (e.g., training and education in the community) needed for FASD assessment and diagnosis.</p> <p>Participants described the need to recruit and maintain trained and passionate staff to increase their small workforce, particularly with clinic coordinators and Indigenous liaisons to support First Nations and Indigenous communities. As caseloads increased over time, participants noted that they had insufficient personnel to cover these growing demands, particularly for case management and follow-up with individuals and families. A handful of participants indicated a shortage of trained, experienced clinicians or noted that their current clinicians were not able to extend more of their practice time for FASD assessment and diagnosis services. Several clinics also relied on itinerant or travelling teams of physicians and psychologists, which posed scheduling challenges. As one participant stated, "In the beginning, that was feasible because our clients, our work, our caseload was much lower. Now in 2021, it's a very big struggle." As a result, participants were looking "at changing the way we're doing things as of now, because the caseload of the coordinators is too much to handle. When you have 200 clients on your caseload, how can you manage that?" These challenges were further exacerbated during the COVID-19 pandemic as many clinic coordinators and key staff members were redeployed during the pandemic to other supports and services (e.g., vaccinations), making caseload management even more challenging and complex.</p> <hd id="AN0179022554-13">Strengths</hd> <p></p> <hd id="AN0179022554-14">Adaptability</hd> <p>Participants also described many notable strengths of FASD assessment and diagnosis in Canada. First, participants described the adaptability of their clinic to "get the job done," including making changes and responding as needed to shifting evolutions in FASD assessment and diagnosis and evolving community and stakeholder needs. Participants spoke often about the resiliency, flexibility, and tenacity of their clinic teams to keep things moving along. As one participant noted, "Everybody's kind of open to criticism and making changes," highlighting the importance of open and honest communication around shared team goals. Participants described how "we're always learning," which for some clinics was supported by the contributions of team members with lived experience of FASD. One staff noted, "Without each of the teams we wouldn't be where we are today because they are so inherent on how we adapt and make changes and more forward." Many clinics also spoke about their ability to do the work simply because they had to. For example, one participant stated, "[We are] still managing to provide basically the same number of assessments for the same dollars that we were given in 2014." Many participants also spoke positively about the opportunities that challenges, such as the pandemic, have offered. For example, participants discussed the virtual connections they were able to make online using various platforms, catching up on data entry and assessment intake information, and creating blended or hybrid in-person and virtual assessments.</p> <hd id="AN0179022554-15">Relational connections</hd> <p>Participants in this study continually emphasised the significant role that strong and supportive relationships played in their work. These relationships included staff's connection to individuals and families, to the broader community, and to external agencies and systems. Participants described the importance of ensuring that individuals with FASD and their families were "not left behind." To do so, participants discussed the need for consistency in the client's life, including individualised post-clinic support that is maintained across the lifespan. As one participant stated, "We are always, always looking for different ways to support our clients and their families." Another participant described how their clinic staff continues to remain involved with larger systems in the individuals' lives, such as the education system: "The coordinators will follow the child in the school system, sitting in on all those meetings to make sure the plans are in place, to make sure that those transitions ... are made."</p> <p>Participants also discussed broader relationship-based initiatives, such as hosting outreach programs for clients and families and hosting FASD support groups. An important component of this work was staff's "willingness to connect" with individuals and families and "to understand these people and make a difference for them and support their family, their support network, and the individual." A significant component of relational connection for participants was ensuring that families felt understood, supported, and not stigmatised. As one participant described, "I think our whole program is really family-centred ... so we really strive to make people feel comfortable and not feel stigma about having their child referred and that's a big positive." This same participant described the open atmosphere they try to foster at their clinic to ensure that families feel safe, supported, and connected to the clinic even after the assessment and diagnosis:</p> <p>We are such a transparent place and so welcoming that people would see [our clinic] as a place to pop into, whether they had an appointment – not that that was necessarily the best thing to do for keeping us on track, but they felt it was a warm enough place for them, and welcoming and supportive, so they could pop in and just say hello, let the support staff know how their kiddo is doing, or pop in with their kiddo. ... It really is a family-oriented place.</p> <p>Participants discussed the important role clinic coordinators play in building community relationships, describing how their clinic coordinators were well connected to, and well liked by, their communities. As one participant noted, "they're very involved in the community, and I've heard nothing but positive things about them." Community relationship building was highlighted as being particularly important for clinics, especially with local supports and services. Participants described working with larger community organisations to build support for individuals with FASD across a range of needs, such as practical assistance with accessing diagnostic services (e.g., gas money, hotel fees), and with a broad array of disability-related supports (e.g., employment services, support with paperwork, financial assistance, help to obtain a driver's license, housing supports, addiction services, childcare, etc.). As one participant said, "Everybody's got a little piece in all kinds of things that are happening around here, but it works really well."</p> <hd id="AN0179022554-16">Culturally responsive approaches</hd> <p>All participants described the importance of addressing the social determinants of health, especially when supporting their Indigenous clients. Participants emphasised that culturally safe approaches should find meaning, value, purpose, and worth inherent in individuals with FASD, and empower Indigenous clients and families on their healing journey. As one participant noted, "It's about addressing the social determinants of health not met with families ... not only addressing FASD but also the instability that comes with the diagnosis for families that are struggling." Participants from clinics that were specifically established to respond directly to the needs of Indigenous communities described a variety of programming and approaches to support their clients. These included building a wraparound "safety net" around the client <emph>and</emph> family including everyone living in the household, having a constant person known as a "circle keeper" that followed and supported the family to ensure that they did not have to repeat themselves or retell their story, and blending together Western approaches with Indigenous ways of knowing to "incorporate and recommend culturally appropriate land-based practices and ceremonies when appropriate."</p> <p>Participants discussed some of the ways in which culturally responsive practices were prioritised in their clinics. For example, some participants described the importance of having an Elder involved with the clinic team. In some clinics, an Elder knowledgeable about FASD sat in on clinics specific for Indigenous individuals and communities. As one participant described, "We make sure that we don't forget that cultural piece, the spirit of the client in itself. I think that's unique to [our clinic] as well." Other clinics that serve Indigenous clients but are not Indigenous-specific also described their approaches to building connections and relationships with Indigenous communities. For example, one clinic who worked with local Indigenous communities stated:</p> <p>We also try and get representation from some of the First Nations as well so that we're ... meeting the needs of their community, ... so if something were to come up or ... here's something you could do better, that we've got those relationships as well.</p> <p>This participant further described their clinic's process of always wanting to learn and do better:</p> <p>After each assessment, the team gets together to talk, so there's always opportunities to say, "What can we do differently or better?" Like right now, we're getting too many assessments coming in ... I would really like to have an Indigenous [physician]. I want to be able to use some of the [funding] ... and take our assessment team onto a reserve into their health units ... so that the Indigenous people don't have to come into our country to be able to be assessed. .... I think it's really important ... if you even have one client who has an Indigenous background, that you are Indigenous aware. You have to really immerse yourself with the communities that are supporting individuals who are Indigenous.</p> <p>These various approaches highlight participants' desires to be culturally safe and responsive in their work and their on-going learning to continue working towards reconciliation.</p> <hd id="AN0179022554-17">Human resources</hd> <p>Finally, although human resources were identified as a significant challenge for clinics, they were also identified as a significant strength. Participants provided extensive examples of the passion, dedication, and commitment of their clinic staff, many of whom had been with the clinic "since the very beginning." As one participant put it, their clinic's "secret sauce is really having a staff that is so, so dedicated to the work we do." When asked what made their clinic unique, many participants described the communication, the team, and the strength of their team to come together.</p> <p>Other participants highlighted their ability to do tremendous good with "a small but mighty team" and joked about their ability to get by with minimal personnel. As one participant teased, "And I really do wish that the math made more sense because we talk about these 'teams', but we're talking about two people per team." Clinic teams were also described as "a well-oiled clock" that could work seamlessly together to respond to emerging issues and challenges with little disruption and in a timely manner. Some participants described their clinic teams as family and shared that "each person has such a vested heart in the place. It isn't just the place that they work, they truly care about each and every client and family." This ability of clinics to have the "right people" meant that teams could come together in a cohesive way to have "many people with the same vision who work really well together to do something and to realize that it's a journey."</p> <hd id="AN0179022554-18">Discussion</hd> <p>Overall, the results of this study indicate that while Canadian FASD diagnostic clinics face several challenges, they are also resilient. In many ways, this finding parallels the larger philosophical shift in the field to approach FASD from a balanced perspective (Flannigan, Wrath, Ritter, et al., [<reflink idref="bib9" id="ref25">9</reflink>]) that accounts for both challenges <emph>and</emph> strengths. Challenges notably included the inability to keep up with increased demands for enhanced diagnostic capacity for several reasons, particularly: the perception that there was not enough time, people, funding, or public and governmental recognition and support to do the work; that there was too much work; and that there were not enough resources or infrastructure to do the job in the way staff wanted to. Several participants felt that their regional governments did not prioritise FASD assessment and diagnosis, which was reflected in their perceptions of having insufficient or unstable resources and funding. It is clear from this study that the challenges faced by clinics are inextricably linked. If there is no buy-in from government, often the primary funders of clinics, it is unlikely that there will be an increase in the funding of clinics. When funding for FASD clinics is inadequate, this can result in an inability to hire additional staff, which in turn maintains the insufficient diagnostic capacity of FASD clinics across Canada (Dugas et al., [<reflink idref="bib5" id="ref26">5</reflink>]). Currently, there is no guarantee of sustainability nationally for all clinics. However, despite these system level challenges, clinics described overcoming these challenges in many ways and adapting to meet the needs of their communities.</p> <p>Some themes, such as human resources, were noted as both a challenge and a strength. Clinics reported that they experience staff shortages and burnout as well as a high demand, not only for their diagnostic services, but also for their knowledge, time, and provision of follow-up supports for clients and families. Coupled with external (e.g., meeting the needs of the community) and internal (e.g., filling all funded assessment spots) pressures to provide assessments, along with intrinsic motivation and passion to support community members in need, there is evidence that FASD diagnostic clinics need enhanced support to hire and maintain clinic staff, including increasing the overall total number of staff to meet all clinic demands. While clinics found the higher demand for FASD assessment and diagnostic services challenging, they also noted that this demand was in many ways a product of their own success. Clinic personnel were more visible in the community to the point that people were more aware of what clinics were doing and how they were helping individuals with FASD and their families. This community involvement in turn resulted in increased referrals.</p> <p>The demand for increased capacity for FASD assessment and diagnostic services is in line with recent findings that FASD clinics often have a critical lack of resources to keep up with referrals received, risking the ability to effectively offer follow-up services for those in need of additional support (Dugas et al., [<reflink idref="bib5" id="ref27">5</reflink>]). Enhancing diagnostic capacity continues to be a well-documented challenge and need in Canada (Clarren et al., [<reflink idref="bib3" id="ref28">3</reflink>]; Dugas et al., [<reflink idref="bib5" id="ref29">5</reflink>]). The conservative estimated prevalence of FASD in Canada is 4% (Flannigan et al., [<reflink idref="bib7" id="ref30">7</reflink>]). In 2021, this equated to over 1.5 million Canadians with FASD; however, many individuals with FASD are likely misdiagnosed or go undiagnosed (Chasnoff et al., [<reflink idref="bib2" id="ref31">2</reflink>]). In the current study, the number of completed assessments varied substantially between clinics, but a common theme <emph>across</emph> clinics was that limited availability of resources hindered their ability to meet growing community demands for assessments. There was a recurrently expressed desire by those interviewed to do more but having no resources with which to accomplish this goal. Even with the existing capacity to conduct several hundred assessments across the country, FASD clinics are barely reaching a fraction of the number of individuals who need FASD assessment and diagnostic services. Participants described how their clinics' struggles to increase service delivery were directly related to a lack of system level resources, with a lack of financial supports having a substantial impact.</p> <p>As a result of these numerous challenges, many rural communities specifically lack access to essential services such as FASD assessment and diagnosis and have had to rely on telehealth services for years. For example, in northern Manitoba, telehealth services have been available for more than 20 years because of the needs in rural and remote communities in the province (Ens et al., [<reflink idref="bib6" id="ref32">6</reflink>]). This Manitoba study was the first to explore successful telehealth services pertaining to FASD assessment and diagnosis in two remote areas to learn more about how it has successfully operated over the years, as well as how to ameliorate these services and build capacity in underserved communities in the province (Ens et al., [<reflink idref="bib6" id="ref33">6</reflink>]). More recent research exploring telehealth services used in diagnostic services for FASD found that even with increasing prevalence rates, access to services continues to be a challenge, especially for those in underserved areas (Whittingham & Coons-Harding, [<reflink idref="bib30" id="ref34">30</reflink>]). Individuals who reside in smaller communities and do not have local access to diagnostic or management services benefit the most from virtual services to avoid the need to travel long distances for numerous appointments throughout the diagnostic process as well as follow-up meetings. Not having telehealth services as an option available might result in challenges that prevent individuals from seeking out much needed support. Data on FASD assessment and diagnostic services using a telehealth approach is still limited, but revisited conversations about telehealth are particularly relevant and important now in light of the COVID-19 pandemic (King et al., [<reflink idref="bib14" id="ref35">14</reflink>]). As described by the participants in this study who made many accommodations and adaptations during the pandemic, providing diagnostic services despite location is possible and the journey to get there varies by clinic.</p> <p>Additionally, the results of this study highlight the need for relational, culturally safe approaches to FASD assessment and diagnosis. Participants talked in detail about the need to support Indigenous communities, including the need to discuss FASD within its colonial context and within the context of (re)connecting to traditional knowledge and practices (Rutman, [<reflink idref="bib24" id="ref36">24</reflink>]; Rutman & Van Bibber, [<reflink idref="bib25" id="ref37">25</reflink>]; Tait, [<reflink idref="bib27" id="ref38">27</reflink>], [<reflink idref="bib28" id="ref39">28</reflink>]). Relationship-based, culturally safe approaches are critical (Rutman, [<reflink idref="bib24" id="ref40">24</reflink>]) in the context of FASD assessment and diagnosis and need to include having trusting, honest, respectful, and caring relationships with service providers or support persons. Individuals and families presenting to FASD clinics need to feel safe and not judged, blamed, or shamed. These findings are in line with best practices connected to FASD, including among FASD prevention approaches (Morton Ninomiya et al., [<reflink idref="bib19" id="ref41">19</reflink>]; Network Action Team on FASD Prevention, [<reflink idref="bib20" id="ref42">20</reflink>]; Pei et al., [<reflink idref="bib21" id="ref43">21</reflink>]), that emphasise relational and trauma-informed care when working with individuals and families, particularly biological mothers.</p> <p>Ultimately, effective FASD diagnostic clinics are those that respond to, and address the needs of, their unique communities. Therefore, there is no "one-size-fits-all" model for FASD diagnostic clinics in Canada (Flannigan, Wrath, McFarlane, et al., [<reflink idref="bib8" id="ref44">8</reflink>]; Pei et al., [<reflink idref="bib22" id="ref45">22</reflink>]). New clinics should be given the flexibility to design and structure their clinic and team in a way that meets the demands and needs of the community that they serve. Funders and policymakers must account for the voices of the public and service providers when establishing a new FASD diagnostic clinic.</p> <hd id="AN0179022554-19">Limitations and considerations</hd> <p>There are several important limitations to note regarding this study. First, since this study was conducted, new diagnostic clinics have been established in certain provinces. Therefore, it would be important to understand whether and how the challenges and strengths of new clinics compare to the long-standing and well-established clinics that we interviewed, and to understand more about ways of supporting new clinics to increase sustainable, successful services.</p> <p>Furthermore, the 10 participating clinics in this study were strategically selected and invited to participate using purposive sampling. This approach provided a good representation of varying clinic structures, geographic locations, and demographics of Canadian clinics to capture a diversity of perspectives. However, other sampling approaches, such as obtaining a random sample of clinics or inviting all diagnostic clinics in Canada to participate, would provide space for further understanding of diagnostic clinic challenges and strengths across Canada. As well, different data collection methods may allow for the exploration of other challenges and strengths that were not addressed by the sample of clinics interviewed here. However, a notable strength of this study was the diversity of clinic structures and settings captured, including the pan-Canadian representation, which lends credibility to the findings presented here.</p> <p>Lastly, the semi-structured interviews were conducted in 2021 during the pandemic, which may have impacted to some degree how participants viewed their work and may have presented different challenges in their work that would have differed had they been interviewed prior to the pandemic. However, interviewing participants during the pandemic provided a novel opportunity to collect real-time data about current clinic challenges, which in many ways enhanced the findings of the current study and brought to light how other existing challenges were enhanced (e.g., human resource demand) or mitigated (e.g., expanded diagnostic capacity via virtual telehealth assessments) as a result of the pandemic.</p> <hd id="AN0179022554-20">Implications for research, policy, and practice</hd> <p>Our findings indicate that increased clinical capacity for FASD assessment and diagnosis should be a top priority in Canada. Future research should focus on how to increase capacity for FASD diagnostic services, including building on what already exists and works well in communities and systems that have resources to develop and implement diagnostic services. More work is needed to better understand what resources are needed or available to build upon existing systems. Future research should also explore interprofessional training and team cohesion that supports the implementation of successful and sustainable FASD assessment and diagnostic teams. Additionally, researchers should continue to explore the utility of telehealth services for FASD assessment and diagnostic services, particularly for rural and remote communities.</p> <p>At a policy and practice level, increased public awareness and policy recognition of FASD is needed. Policy considerations should include the hiring of clinic coordinators and team members, the selection of diagnostic team members available to the clinic, the implementation of the Canadian FASD diagnostic guideline and multidisciplinary team assessment, and the onboarding of government and relevant stakeholders to understand the value of FASD assessment and diagnostic services. This need for increased understanding and recognition of FASD is in line with recent advocacy for a National FASD Strategy in Canada. Additionally, practice recommendations should emphasise the common thread that clinics should be established based on community need. All FASD clinics should strive to provide relational, culturally safe care. Community connections should be established that build strong relationships between clinic staff, the multidisciplinary team, clients and families, community programs, and the broader stakeholder community. Clinics should consider how they could best leverage their creativity and adaptability to provide the best possible services considering their ongoing challenges, including exploring telehealth service delivery, mentorship of new and emerging clinics, and being efficient with their available funding.</p> <hd id="AN0179022554-21">Conclusion</hd> <p>This study is an important first step towards understanding some of the challenges and strengths experienced by FASD diagnostic clinics in Canada. Our findings demonstrate the importance of strong relationships and collaborative work between professionals, clients, families, and community partners. Participants in this study were incredibly proud of the work that they do and emphasised the passion that is integral to this work. Importantly, the findings presented here also indicate priority areas for continued advancement of FASD practice and policy in Canada, including the need for more funding, resources, awareness, understanding, and recognition of the importance of increasing clinical capacity for FASD assessment and diagnostic services across the country.</p> <hd id="AN0179022554-22">Acknowledgements</hd> <p>The authors of this study would like to acknowledge and thank the 12 participants who graciously shared their time and experiences with us. The authors would also like to acknowledge and thank the Lakeland Centre for Fetal Alcohol Spectrum Disorder for their support of this work and their assistance with identifying the key informants approached for participation in this study.</p> <hd id="AN0179022554-23">Disclosure statement</hd> <p>No potential conflict of interest was reported by the author(s).</p> <hd id="AN0179022554-24">Appendix. Semi-structured interview guide for Canadian FASD diagnostic clinics</hd> <p></p> <ulist> <item> Tell me about the history of your diagnostic clinic.</item> <p></p> <item> <emph>Follow-up</emph>: How did your clinic come to be?</item> <p></p> <item> <emph>Follow</emph>-<emph>up</emph> (<emph>History</emph>): How many years has your clinic been operating for? How has this changed over the years?</item> <p></p> <item> Please tell me about the population that you serve at your diagnostic clinic.</item> <p></p> <item> <emph>Prompts</emph>: Population/community served? Age group your clinic serves (i.e., birth to age of majority; youth only; both youth and adults; adults only; justice; etc.)?</item> <p></p> <item> <emph>Follow</emph>-<emph>up</emph> (<emph>Demographics</emph>): What geographic region do you serve? How many clients do you see a year?</item> <p></p> <item> How does your clinic currently operate/run? What is the umbrella or agency that your clinic operates under? (i.e., health region; not for profit; justice; etc.).</item> <p></p> <item> <emph>Follow-</emph>up: How is your clinic currently funded? What is the management structure? Who is the clinic "answerable" to? Who do you report to? Who provides oversight of your clinic?</item> <p></p> <item> What was the biggest challenge or obstacle to get FASD assessment and diagnosis clinic services operating in your region (e.g., funding, finding clinicians, community/stakeholder engagement, support)?</item> <p></p> <item> <emph>Follow-up</emph>: How did you overcome these challenges?</item> <p></p> <item> <emph>Follow-up</emph>: What are the biggest challenges still facing your clinic today?</item> <p></p> <item> How do you engage with the community you support?</item> <p></p> <item> <emph>Follow-up</emph>: Tell me about any community partnerships related to your diagnostic clinic.</item> <p></p> <item> <emph>Follow</emph>-<emph>up</emph>: Does your clinic provide follow up support? If so, what does this look like?</item> <p></p> <item> Do you receive any in-kind or partial in-kind contributions from agencies, professionals on your team, or those doing assessments? (e.g., speech language pathology or occupational therapy assessment and clinic presence from health region, school, child development centres, etc.)</item> <p></p> <item> <emph>Follow-up</emph>: If so, please explain how this works.</item> <p></p> <item> What do you consider to be the biggest strengths of your clinic?</item> <p></p> <item> Does your clinic use any virtual or telehealth platforms to complete any of the assessment or diagnostic clinic processes? If so, how is telehealth used and implemented at your clinic?</item> <p></p> <item> <emph>Prompt</emph>: What parts of the assessment and diagnostic processes are completed using telehealth? For example, interviews, clinician assessments, diagnostic formulation, caregiver/client debriefs, etc.</item> <p></p> <item> What makes your diagnostic clinic unique?</item> <p></p> <item> <emph>Follow-up</emph>: What specific or unique processes or policies have you implemented that have added efficiencies, strengths, or productivity to improve services at your clinic?</item> <p></p> <item> If you were helping with the development of a new diagnostic clinic, what would you prioritise?</item> <p></p> <item> <emph>Prompt</emph>: What is the most important piece of advice you would offer to someone trying to start up a new diagnostic clinic?</item> <p></p> <item> <emph>Follow-up</emph>: What advice or "words of wisdom" would you share with new diagnostic clinics?</item> </ulist> <ref id="AN0179022554-25"> <title> References </title> <blist> <bibl id="bib1" idref="ref8" type="bt">1</bibl> <bibtext> Canada FASD Research Network. (2023). FASD diagnostic clinic cards. 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  Data: 2024
– Name: TypeDocument
  Label: Document Type
  Group: TypDoc
  Data: Journal Articles<br />Reports - Research<br />Tests/Questionnaires
– Name: Subject
  Label: Descriptors
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Fetal+Alcohol+Syndrome%22">Fetal Alcohol Syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Clinical+Diagnosis%22">Clinical Diagnosis</searchLink><br /><searchLink fieldCode="DE" term="%22Barriers%22">Barriers</searchLink><br /><searchLink fieldCode="DE" term="%22Affordances%22">Affordances</searchLink><br /><searchLink fieldCode="DE" term="%22Clinics%22">Clinics</searchLink><br /><searchLink fieldCode="DE" term="%22Human+Resources%22">Human Resources</searchLink><br /><searchLink fieldCode="DE" term="%22Cultural+Relevance%22">Cultural Relevance</searchLink><br /><searchLink fieldCode="DE" term="%22Interpersonal+Relationship%22">Interpersonal Relationship</searchLink>
– Name: Subject
  Label: Geographic Terms
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Canada%22">Canada</searchLink>
– Name: DOI
  Label: DOI
  Group: ID
  Data: 10.3109/13668250.2023.2293336
– Name: ISSN
  Label: ISSN
  Group: ISSN
  Data: 1366-8250<br />1469-9532
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Background: The Canadian fetal alcohol spectrum disorder (FASD) diagnostic guideline provides clinicians with the process and procedure to reach an accurate diagnosis. However, organisational structure, culture, and resource utilisation vary. The objectives of this study were to identify the key challenges and strengths of successful FASD diagnostic clinics. Method: Qualitative interviews were conducted with 12 key informants from 10 clinics representing different regions, populations served, and clinic structures. Data analysis was performed using iterative thematic inquiry. Results: Three themes related to challenges and four themes related to strengths were identified. Human resources were identified as both a challenge and strength. Additional challenges were diagnostic capacity and system level support. Additional strengths were clinic adaptability, relational connections, and culturally responsive approaches. Conclusions: FASD clinics are more alike than not in their approach to assessment and diagnosis. Some clinics are facing similar challenges that others have overcome, supporting the need for mentorship and consistent operating standards.
– Name: AbstractInfo
  Label: Abstractor
  Group: Ab
  Data: As Provided
– Name: DateEntry
  Label: Entry Date
  Group: Date
  Data: 2024
– Name: AN
  Label: Accession Number
  Group: ID
  Data: EJ1435544
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=eric&AN=EJ1435544
RecordInfo BibRecord:
  BibEntity:
    Identifiers:
      – Type: doi
        Value: 10.3109/13668250.2023.2293336
    Languages:
      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 11
        StartPage: 331
    Subjects:
      – SubjectFull: Foreign Countries
        Type: general
      – SubjectFull: Fetal Alcohol Syndrome
        Type: general
      – SubjectFull: Clinical Diagnosis
        Type: general
      – SubjectFull: Barriers
        Type: general
      – SubjectFull: Affordances
        Type: general
      – SubjectFull: Clinics
        Type: general
      – SubjectFull: Human Resources
        Type: general
      – SubjectFull: Cultural Relevance
        Type: general
      – SubjectFull: Interpersonal Relationship
        Type: general
      – SubjectFull: Canada
        Type: general
    Titles:
      – TitleFull: Challenges and Strengths Experienced by Fetal Alcohol Spectrum Disorder Diagnostic Clinics in Canada
        Type: main
  BibRelationships:
    HasContributorRelationships:
      – PersonEntity:
          Name:
            NameFull: Kelly D. Harding
      – PersonEntity:
          Name:
            NameFull: Colleen Burns
      – PersonEntity:
          Name:
            NameFull: Christine Lafontaine
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            NameFull: Andrew Wrath
      – PersonEntity:
          Name:
            NameFull: Alicia Groom
      – PersonEntity:
          Name:
            NameFull: Katherine Flannigan
      – PersonEntity:
          Name:
            NameFull: Kathy Unsworth
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          Name:
            NameFull: Audrey McFarlane
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          Dates:
            – D: 01
              M: 01
              Type: published
              Y: 2024
          Identifiers:
            – Type: issn-print
              Value: 1366-8250
            – Type: issn-electronic
              Value: 1469-9532
          Numbering:
            – Type: volume
              Value: 49
            – Type: issue
              Value: 3
          Titles:
            – TitleFull: Journal of Intellectual & Developmental Disability
              Type: main
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