This paper explores what happens to care, and decisions about ending and extending life, when research animals become pets and pets become research animals. To do this, we draw on in-depth qualitative research on (i) rehoming of laboratory animals, (ii) veterinary clinical research, and (iii) the role of the Named Veterinary Surgeon (NVS) in UK animal research. We begin by exploring how (in theory and practice) the ethical, affective, and practical elements of care are split in the research laboratory. We then investigate arguments for and against ending and extending animal life via clinical research and rehoming, highlighting how these activities bring norms and dilemmas around animal death in the laboratory and veterinary clinic to the fore. We conclude by demonstrating the value of investigating borders between animal categories for understanding dilemmas around care and death, and for contributing to emerging literatures within geography around animal care, death, and categorisation. Key contributions of our work include highlighting: how care roles can be split; the importance of considering speculative and in-practice elements of care; the context-dependency and multiplicity of practices of killing in the veterinary clinic and laboratory; and the flexibility and changing nature of animal categories. Imagine a dog who has lived her whole life in a research laboratory, who was used for breeding because she carries a gene needed to maintain the colony. After a lengthy socialisation process involving slowly exposing the dog to novel stimuli she is expected to encounter in the home , she is now ready to be ‘rehomed’ by moving to a private home as a pet. The laboratory staff have become very attached to this dog , so they are simultaneously sad to see her go, apprehensive that she receives as much care in her new home as in the lab, and joyful that Molly has the chance to continue living a fulfilling life now that her service to science has ended. Meanwhile, another dog, Rover, has been enrolled by his owner (Richard) in a clinical trial for a new chemotherapy drug. Rover’s health has been deteriorating, and Richard is desperate to see his old friend have the best possible care, and to spend a little more time together. The specialist vet running the research project explains that the treatment may help Rover continue living a fulfilling life. Regardless, Rover will be helping other dogs, and possibly even humans, suffering from similar conditions. Richard signs a consent form, and Rover begins treatment.These two scenarios illustrate the central purpose of this paper: to explore what happens to care, and decisions about ending and extending life, when research animals become pets and pets become research animals. In doing so, we build on growing literatures within geography on animal care, death, and classification. Care involves attending to the welfare of others, and can be framed as simultaneously ‘a vital affective state, an ethical obligation and a practical labour’ : a collaborative, interdisciplinary project seeking to understand historical and contemporary factors that have shaped the UK’s social contract around animal research.This paper is based on qualitative research in UK animal research communities, undertaken as part of We draw on three strands of AnNex. The first centres on the rehoming of laboratory animals, to private homes, wildlife sanctuaries, zoos, aquariums, and farms. This research was primarily undertaken by TS and involved 28 semi-structured interviews with animal research facility staff , rehoming organisation employees , and individuals who had rehomed animals . It additionally involved informal conversations and ethnographies at numerous animal research facilities. The second strand, primarily undertaken by AP, focused on non-laboratory animal research, including work at wildlife and fisheries field sites, farms, zoos, and veterinary clinics. It involved interviews with 30 participants, and informal conversations with 24 others; 9 (17%) of these conversations focused primarily on veterinary clinical research, while 10 (19%) were with individuals with experience across research venues. Participants included researchers, regulators, and vets, but no animal owners. The project also involved participant-observation, including during a veterinary clinical trial, and a stakeholder workshop on non-laboratory research , the Central University Research Ethics Committee of the University of Oxford (Reference Number: SOGE 18A-7), and the University of Nottingham School of Veterinary Medicine and Science .We begin by asking: who makes the difficult decisions about care and death in rehoming and veterinary clinical research? On what grounds are they granted this responsibility, and what can this tell us about conceptions of care for research animals versus pets? We begin by examining how ethical, practical, and affective elements of care are in theory split in the laboratory, before exploring discrepancies between care as outlined in law and in practice.they say, “[…] can’t you see it?” and I say “No, because you look at mice every single day and I only look at them once in a while”. So I will always defer to their greater experience and if they say it’s lame, I’ll take their word for it – and usually I can see it once they’ve pointed it out to me. The UK’s Animals in Scientific Procedures Act (A(SP)A) (1986), overseen by the Home Office, regulates the treatment of research animals. Under A(SP)A, decisions about rehoming and euthanasia are made by the named veterinary surgeon (NVS), whose primary role is to offer ‘independent advice on animal welfare’ within a research institution. Given this role, A(SP)A guidance indicates that it is especially important for NVSs to avoid ‘conflicts of interest that may affect their judgment’ Because of this arrangement under A(SP)A, signing one’s pet up for a veterinary clinical trial means signing over decision-making about care and death to the NVS. Whether animal owners realise they are doing this is, however, less clear. Owners are required to sign consent forms before their pet participates in a clinical trial under A(SP)A, and researcher Charles indicated that the Home Office asked him to clearly state in his consent form that ‘in these circumstances we would insist on euthanasia’ . However, not all veterinary clinical trials are conducted under A(SP)A – a complex situation that we have explored elsewhere A, they no longer have the final say on when to euthanise. This is in direct contrast to the ordinary veterinary clinic, where the owner has the final say over care and euthanasia decisions, even if the vet disagrees. Rollin  proposesThe view that vets should have the final say was sometimes expressed by our research participants as a call to make companion animal treatment more like the laboratory, by separating the ethical element of care from the practical and affective. For example, veterinary professional Elaine argued, ‘when you’re working with a research animal, you make your decision entirely based on what’s in the animal’s best interest. And I would argue that you should be doing it in a clinic, but that’s absolutely not what we do’ While clinical research represents a fulfilment of the wish to have vets responsible for decision-making, the reverse occurs in rehoming, with responsibility shifting from the NVS to the animal’s new owner. This was a source of concern for some laboratory staff involved in rehoming. As NVS Megan observed, ‘With rats and mice, people don’t always take them to the vet as quickly as they should if they’re ill. Whereas, in a lab, if an animal was ill, they would be treated straight away’ . It was hoped that new owners would take good care of their rehomed animals. However, once rehomed, animals are treated as ordinary pets in that even if a vet recommends against something , it is up to the owner Morris, . Care prThe laboratory was thus viewed as having greater standardisation of care, due to the processes and oversight in place, and division of care labour such that final decisions are in the hands of the NVS rather than the owner. For this reason, rehoming involves speculation and uncertainty on the parts of laboratory staff. In contrast, veterinary clinical research involves vets reclaiming control of care decisions from animal owners – though potentially in a somewhat awkward, poorly communicated manner.I remember that slight tension around the fact that you know, it was me saying he had to be homed and then also me saying I had to take him […] [I]t became very difficult to maintain the position that I wasn’t doing this just for my own good to get my dog quicker, but that I was trying to be professional at the same time and make the right decisions. Although laboratory care is in theory quite standardised, the practice is more complex. For example, NVSs may become emotionally invested in animals, prompting a need to break away from the typical process outlined in A(SP)A. This is unsurprising, given that bonds nonetheless develop in many contexts where people attempt to remain unattached to animals, such as in farming Wilkie, , wildlifWhen such conflicts arise, an independent party may be brought in. For example, NVS Megan rehomed guinea pigs after she ‘ended up feeling sorry for them. I got one of the other NVSs to do the health check so there wasn’t the conflict of interest.’ This flexible approach served to keep the affective and ethical elements of care separate, thereby upholding a principle of care embedded in A(SP)A.science – they also hold considerable expertise on the animal’s condition. Furthermore, this conflict of interest may in practice become minimally apparent if there is a good working relationship between the two vets. While some expressed concerns that the researcher is ‘automatically biased’ , others suggested that in practice researchers ‘are pretty professional about it’ and ‘know that they have to have independent input’ (interview with researcher Charles).Care in practice may break away from the theory in other ways as well. For example, decisions about care and death in clinical trials are not necessarily made exclusively (or even primarily) by the ‘neutral’ NVS. In veterinary clinical research under A(SP)A, the ordinarily ‘triadic’ relationship between vets, clients, and animals Sanders,  becomes Several participants added that in practice it is quite rare for the NVS to insist on euthanasia without the agreement of the animal’s owner. This is in part because, as correctly guessed by vet Charlotte, clinical research typically involves ‘pets with pretty bad diseases where there maybe isn’t another option and this is the last chance that pet has, or maybe that the pet’s fine and […] there’s going to be relatively minimal harm associated with it’. Thus, euthanasia decisions in clinical research might be either highly unlikely, or viewed as an inevitability. It is possible that veterinary clinical research under A(SP)A can only comfortably occur when one of these two scenarios applies and conflict between owners and vets over euthanasia is expected to be minimal. Some participants also reflected that when it comes to clinical research and experimental veterinary treatments, decisions about euthanasia should rely on the classic ‘skills of diplomacy’ central to all veterinary clinical practice A .Extending animal life via rehoming and veterinary clinical research might sound inherently positive. However, some argue that ending life is preferable in certain cases, specifically when animals are expected to suffer Morris, . A commo Yeates, . Humane This view of death shapes rehoming guidance and practice. Guidance offered by Directive 2010/63/EU A) states that animals can be rehomed if: ‘the state of the health of the animal allows it’, ‘there is no danger to public health, animal health, or the environment’, and ‘appropriate measures have been taken to safeguard the well-being of the animal’ Euthanasia is not only the default, legally and practically, but is also sometimes preferred, where there was a perceived risk of the animal suffering. Jane, who works at a rodent facility, explained that with some animals she ‘wouldn’t [rehome] now […] because of welfare reasons’. Jane cited the example of curly-haired mice, whichNVS Olivette similarly reflected on the difficulty of keeping some animals alive for extended periods, such as a particular strain of mice with ‘bad teeth’ that require trimming. Olivette explained that, ‘I’m not happy to cut for a lifetime, you can’t, it’s all the damage you do with the splintering and everything else’; she therefore is only happy to trim teeth up to three times before euthanising the mouse. Certain animals, which are purpose-bred for research, are therefore inherently unsuitable for rehoming or otherwise keeping alive beyond the research period because of their phenotype. Rehoming such creatures could be viewed as a kind of ‘misguided benevolence’ that would lead to unnecessary animal suffering A, since his project would likely have faced no controversy if he had proposed to conduct it with laboratory animals, but he faced difficulty getting it approved for pets.Several participants observed that this preference for euthanasia was most often expressed by veterinary anaesthetists, perhaps because, as one anaesthetist noted, their work directly involves assessing and minimising suffering . For example, another anaesthetist described being ‘horrified’ by a particular clinical study she’d witnessed, on account of ‘the amount of suffering these animals went through’ (interview with AP). However, the anaesthetist was broadly supportive of laboratory animal research, and was specifically concerned about clinical research due to a perceived lack of oversight of some experimental treatments  laboratory animals an intrinsic value (Thierman, The idea of animal life as intrinsically valuable can also be used to justify the notion that allowing suffering is an inevitable element of care. Drawing on the veterinary palliative care practices of the Skanda Vale spiritual community in Wales, Hurn and Badman‐King  argue thTo conclude, we reflect on what lessons our case studies can offer for geographies of animal care, death, and categories.Our research highlights that UK animal research law seeks to split off the ethical from the affective and practical elements of care. This splitting of care is founded on the idea that intimate bonds developed through daily care compromise decision-making about animal care and death, an assumption echoed in other contexts such as conservation Palmer, . This asA second implication for care highlighted in our research was to reiterate the importance of attending to care in practice, not just in regulations or standards (see, Greenhough & Roe, Finally, our work supports Puig de la Bellacasa’s , p. 66 aOur case studies also speak to the important, but under-studied, subject of animal death Mazhary,  by highlOur research therefore suggests that pets do not necessarily have better lives or deaths than research animals: that depends on the specific context, and on personal ethical judgements such as whether suffering is worse than death. This means that while pets are typically ascribed higher ranks on ‘sociozoologic’ and ‘zoometric’ scales than research animals (Arluke & Sanders, We have additionally highlighted the changing nature and flexibility of animal classifications. Professional, social, and legal changes mean that the animal welfare implications of categorisation shift over time; norms around ending and extending life for pets are on the move, according to some of our research participants. Categories are also highly flexible, particularly in liminal contexts. For example, certain elements of a previous classification may readily ‘stick’ where animals shift between categories, such as when animal owners are made to feel included in decisions about care and euthanasia in clinical trials even when their consent is no longer legally required. This might occur via deployment of classic ‘skills of diplomacy’ used in the veterinary clinic, or researchers and regulators together ensuring that the only clinical research that takes place involves animals for whom euthanasia is highly unlikely or an inevitability, thus minimising conflicts between vets and animal owners. Furthermore, our research highlights how socio-legal categories intersect in important ways with species categories; for example, it is particularly easy to treat research dogs as pets (Giraud & Hollin, These complexities highlight the need for further research investigating the details of how and why animal classifications and hierarchies emerge, the animal welfare implications of classification, and the limitations to thinking categorically given the complexities of real-world human-animal interactions. As we have shown, borders and transition zones between animal categories are particularly valuable places for investigating these matters.


Digital tools such as wearable sensors may help to monitor Parkinson’s disease (PD) in daily life. To optimally achieve the expected benefits, such as personized care and improved self-management, it is essential to understand the perspective of both patients and the healthcare providers.We identified the motivations for and barriers against monitoring PD symptoms among PD patients and healthcare providers. We also investigated which aspects of PD were considered most important to monitor in daily life, and which benefits and limitations of wearable sensors were expected.n = 14), physiotherapists (n = 5), and nurses (n = 6), as well as individual interviews with neurologists (n = 5).Online questionnaires were completed by 434 PD patients and 166 healthcare providers who were specialized in PD care . To gain further understanding in the main findings, we subsequently conducted homogeneous focus groups with patients  discuss findings with healthcare providers, (2) obtain insight in the effect of medication and other treatments, and (3) follow the progression of the disease. Key barriers were: (1) not wanting to focus too much on having PD, (2) symptoms being relatively stable, and (3) lacking an easy-to-use tool. Prioritized symptoms of interest differed between patients and healthcare providers; patients gave a higher priority to fatigue, problems with fine motor movements and tremor, whereas professionals more frequently prioritized balance, freezing and hallucinations. Although both patients and healthcare providers were generally positive about the potential of wearable sensors for monitoring PD symptoms, the expected benefits and limitations varied considerably between groups and within the patient group.This study provides detailed information about the perspectives of patients, physiotherapists, nurses and neurologists on the merits of monitoring PD in daily life. The identified priorities differed considerably between patients and professionals, and this information is critical when defining the development and research agenda for the coming years. We also noted considerable differences in priorities between individual patients, highlighting the need for personalized disease monitoring. PatiTo deliver on these promises, it is essential that such tools address specific needs experienced by PD patients and their healthcare providers. This requires a thorough understanding of the diverse perspectives on symptom monitoring and wearable sensors of all stakeholders involved . PD patiBecause health monitoring behavior is not limited to patients, some useful insights can be obtained from studies in the general population. Using a survey among 150 self-trackers, five different motivations for self-tracking were identified, consisting of self-design (possibilities of self-optimization), self-discipline (self-gratification possibilities), and self-healing , self-entertainment (pleasure-bringing aspects), and self-association (sharing results with others and being part of a community) . This frThe perspective of different PD healthcare providers on symptom monitoring, and how this relates to the perspective of patients has received little attention so far. Studies on symptom monitoring in PD that included healthcare providers did not differentiate between different disciplines  , 15, or The aim of this study is to provide insights that can fuel the development of remote monitoring tools that address specific needs experienced by patients and/or healthcare providers. Specifically, our objectives were to identify the motivations for and barriers to monitoring PD symptoms, and to better understand the expected benefits and limitations of wearable sensors. In addition, we aimed to assess which aspects of PD are considered most important to be monitored in daily life. Finally, we aimed to compare the perspectives of PD patients and healthcare providers specialized in PD .2.2.1.We used a two-phase, explanatory mixed method design, consisting of online surveys, and subsequent homogeneous focus groups and interviews among the different stakeholders to gain further understanding in the domains of interest that were identified in the preceding surveys , 17. We 2.2.Seven hundred and eleven persons with PD were invited by email to participate in the online survey. All invitees were on the waiting list to be included in the Parkinson@Home study . Variousvia ParkinsonNet.We also included healthcare providers who were specialized in PD care. We chose to focus on the perspectives of neurologists, physiotherapists and Parkinson nurses, because the survey among patients showed that these healthcare providers are most frequently involved in PD care in the Netherlands . To ensu2.3.We developed two surveys: one for patients and one for healthcare providers. The surveys consisted of a combination of validated questionnaires and custom-developed questions, on the following domains: current use of monitoring tools, motivations for and barriers to monitoring PD, relevant aspects to monitor, and expected benefits and limitations of wearable sensors for monitoring PD.First, the surveys addressed the participants’ experience with symptom monitoring, including the use of PD monitoring tools. Among patients, we assessed motivations for and barriers to self-monitoring PD symptoms using open-ended questions, and using the validated 19-item motivations for self-tracking scale . This scTo assess whether participants could understand the questions and formulate appropriate answers, we performed cognitive interviews prior to deployment . These iThe surveys were implemented using SurveyGizmo2.4.All data were analyzed separately for each stakeholder group. Persons with PD were divided into early (≤5 years since diagnosis) and late PD groups (>5 years since diagnosis) . All ans2.5.homogeneous focus groups matches our hypothesis that the different stakeholders represent unique needs, which may require different solutions . For logistical reasons, we conducted individual, semi-structured interviews with five neurologists. Because the goal of the focus groups and interviews was to further explore the findings of the surveys, we did not aim for data saturation.To gain a deeper understanding of the results of the survey and collect illustrative examples, we conducted homogeneous, semi-structured focus group discussions; two groups were organized with persons with PD, one group with physiotherapists specialized in PD, and one group with Parkinson nurses. We opted for focus groups because we expected that a group setting would stimulate further discussion about items that were considered relevant by more than one group member . The choThe Value Proposition Canvas, a framework for matching proposed solutions to experienced needs , was use2.6.All focus groups and interviews were audio recorded and transcribed verbatim. One researcher coded the transcripts using the four themes of the topic guide as pre-defined framework. Within these general themes, thematic analysis based on inductive coding was used. A second, independent researcher commented on the codes to improve their validity. In case of disagreement, the researchers discussed their interpretation of the codes until consensus was reached. Atlas.Ti (version 8.2.29) was used to facilitate the qualitative analysis.3.We will first discuss the results of the online surveys, including the current use of monitoring tools, motivations and barriers for monitoring PD, the most important PD aspects to monitor, and the expected benefits of wearable sensors for monitoring PD. Then we will zoom into different promising contexts for using wearables sensors for each group, discussing the theme’s emerging from the analysis of the focus groups and interviews. Finally, we present expected barriers of wearable sensors, identified in the surveys, focus groups and interviews combined.The online surveys were completed by 429 PD patients (response rate 60%), 86 physiotherapists (response rate 55%), 55 nurses (response rate 34%) and 25 neurologists (response rate 29%). The background characteristics of the included PD patients are shown in 3.1.Approximately one third of the patients had tracked their PD symptoms during the previous year, with no differences between early PD  and late PD . Most healthcare providers used self-collected information from patients; almost all specialized nurses (94%) recommended at least some of their patients to record the course of symptoms, versus 80% of physiotherapists, and 68% of neurologists. Various modalities of paper diaries were the most frequently used tools among all patient and healthcare provider groups (range: 62–96%). Common examples included free notes, on/off state diaries and falls diaries. The use of digital tools was less prevalent; 14% of patients who monitored their PD used a website [most often the “Parkinson’s Well-Being Map” ], 12% us3.2.n = 145), we identified various themes describing their motivations to do so  following the disease progression over longer time periods , and (2) dealing with the emotions associated with having PD . Motivations mentioned more often by the late PD group were (1) to better remember symptoms (“because you cannot remember the many complaints that you come across during the day”), and (2) to be able to undertake actions yourself to improve your well-being .Among patients who tracked their PD symptoms during the previous year , whereas self-healing  and self-entertainment (the pleasure-bringing aspects) were the least important motivations at the group level. On most dimensions, considerable variation was observed between patients .n = 138, late PD: n = 146), we identified various themes describing reasons for this  of patients who had not tracked their PD during the previous year indicated to be interested in self-monitoring.Among patients who had not tracked their PD symptoms during the previous year , and all healthcare providers were asked for their three most important symptoms and other factors that would merit monitoring in daily life. The five most frequently selected items per group are shown in ρ = 0.95, late PD: ρ = 0.96) and how strongly fluctuating symptoms were . Healthcare providers mentioned several considerations for their selection, including (1) whether they expected that the symptom had a high impact on the patient’s quality of life and/or daily life functioning, (2) whether they could effectively treat the symptom, and (3) whether there is a “knowledge gap,” for example because there is a need for frequent information , or because the reliability of in-clinic anamnesis is limited . Some healthcare providers also mentioned increasing the patients’ self-awareness of symptoms as a motivation for their selection.The patients who indicated to be interested in monitoring their PD  to 7 (“strongly agree”), they responded to the statement “I believe that wearable sensors have the potential to help me monitor my Parkinson patients” with a mean score of 5.5 (neurologists), 5.5 (physiotherapists), and 5.4 (nurses). “If they are unobtrusive for the patient, it hardly affects their activities and thinking,” and “Then the patients do not need to actively make notes.” Nurses and physiotherapists also saw opportunities for wearable sensors to support self-management and treatment compliance. Different nurses wrote: “People obtain more insight into the course of their disease, and receive guidance for self-management,” and “It can motivate patients, increase their involvement, and make things more insightful for patients themselves.” Physiotherapists mentioned: “It can help patients to see for themselves what they can and cannot do,” and “It provides people with feedback. And that could well be very different from how people currently see things.”In addition, different nurses and physiotherapists emphasized that wearable sensors could make it easier for patients to track their disease: “It can help to obtain better insights into the level of functioning, and fluctuations in time.”For neurologists, one of the main expected benefits of wearable sensors was obtaining more detailed measurements of symptom fluctuations throughout the day: 3.5.n = 5) elaborated on the management of balance problems and falls, the neurologists (n = 5) on the management of response fluctuations, the nurses (n = 6) on supporting self-management, and the patients on communication with their healthcare providers . Below we describe the main findings related to the experienced challenges (“pains”) of currently used monitoring tools and the potential advantages of wearable sensors  the in-clinic performance measured with standardized assessments (such as the mini-BEST) does not fully explain why some patients fall frequently and others do not: “On the balance board they perform quite well, their strength is rather good, their catch response is good, and still they fall 3 times per week. That is quite frustrating,” and (3) patients tend to forget applying strategies to prevent falling that the therapists teach them in-clinic: “When I am standing next to them, they perform things very differently. Last time a patient stepped over everything, but when I walked next to him he carefully walks around obstacles and takes the right path.”Three main “pains” were identified in the current treatment of falls and balance problems: (1) it is difficult to find out what precedes fall incidents in the patient’s daily life, especially in patients with cognitive impairments or without a partner: ““If I as a therapist see someone who has reached his limit and I can talk with the patient about that: on these moments in your daily life you take risks.” Objective data about what precedes a fall incident could help to identify different “fall profiles” that would enable more targeted therapy. One physiotherapist said: “Together with the tests with patients we already perform, I would like to make a sort of risk analysis, of which factors are causing the fall. Then, based on the patient profiles, I can give my patients tailored verbal instructions. That would be a good example of using wearable sensors and connecting data.” Sensor devices could also be used to coach patients, for example by detecting situations with high fall risk and providing warnings or reminders to apply the right movement strategy: “If it has to do with selective attention and the sensor can recognize the movements before a fall occurs, then a warning signal may make someone alert so that he makes the right decision,” or coach patients to maintain a healthy gait pattern: “I can imagine that you have a sensor that in some situations sends a verbal message: pay attention, big steps, keep on stepping.” In addition, the therapists saw benefits for stimulating patients to do balance exercises: “It think it can be motivating for balance exercises which they need to perform at home, and they receive a signal when it goes well.”According to the physiotherapists, wearable sensors worn in daily life could help by increasing the self-awareness of the fall frequency and situations with a high fall-risk, as a starting point for therapy: 3.5.2.“Often patients say I am not doing well doctor, and then you need to figure out why: is it because of motor problems? And if this is the case, is it rigidity, dyskinesia or tremor?.” Self-reported on–off diaries are often not very helpful: “The patients who can accurately describe it are also capable of filling out such a dairy, it’s mostly the patients who find it hard to explain it, they also have problems completing the on–off diaries.” A complicating factor is that some patients find it difficult to distinguish between tremor and dyskinesias. Second, it is difficult to rely on in-clinic observations: “The situation here in the consultation room is always different than at home, so you rely on what patients experience at home.” Third, it can be challenging to determine who is eligible for advanced therapies: “I often refer them to Nijmegen for that, and then they also find it difficult. It is very difficult to get an accurate picture. Now patients are often admitted to the hospital for that.”Three main “pains” regarding managing response fluctuations were identified. First, neurologists often find it difficult to understand the daily patterns of response fluctuations based on the patient’s story. One neurologist said: “That you can give the right medication dosage more quickly, that you can go through the process of adjusting the medication schedule faster,” and “Then you can see at a glance whether the patient responds to the treatment or not.” Specifically, it could be helpful to find out whether motor symptoms are the main problem: “It would give a nice impression of how patients are doing in terms of motor symptoms, and if you see that patients are doing well motorically, then you know something else is going on. I think that that is a huge benefit.” In addition, it might help to identify patients who would benefit from advanced therapy: “That you can identify the phase when the medication really does not work anymore earlier. And that you can use this to refer patients for advanced therapies in an earlier stage.” The ability to provide care proactively was also seen as an important benefit: “I think that you can also use it to signal problems in an early stage, …, that you receive an early signal when a patient falls outside a certain range, when we should schedule an earlier check-up, or when the GP or local Parkinson nurse should have a look, to prevent certain problems, for example falls, confusion, or delirium.” In addition to these forms of decision support, neurologists also mentioned benefits for their communication with patients. Wearable sensors may help to increase the self-awareness of patients: “You may give a patient more insights into his own functioning if you can monitor him for a longer time than when you briefly discuss things in the consultation room.” It may also help to focus the conversation: “It makes the conversation much more concrete, because you can focus very timely on the current problems of a patient.”Objectively quantifying response fluctuations in real-life could help neurologists to find the right medication dosage more efficiently: 3.5.3.“If we ask very specifically, what do you experience and how does it present itself, patients often find it difficult to pinpoint,” and “I saw a patient and when she goes into an off state, she really panics. She does not recognize the off phenomenon yet, which makes her hyperventilate.” In addition, for some patients understanding the difference between tremor and dyskinesias is difficult: “If you are dyskinetic, and you take extra dopamine, it only becomes worse.” Some patients also have the tendency to underestimate their sleep duration: “Sometimes it is the experience of a patient that he sleeps for only 3 h, while it appears to be different. I always find this a difficult point to discuss.” Second, the nurses emphasized that completing diaries is often burdensome for patients: “The partner or someone else constantly looks over your shoulder and says: “you still need to fill it in,” and that drives some people crazy.” For some PD patients, this may even become an obsession: “The people who become very rigid in their behavior because of their PD and who want to rationalize everything in numbers, they sometimes show up with whole packages of information and then the partners tell us: “we cannot leave the house without taking pen and paper with us,” or they bring extensive tables and graphs. That is real obsessive behavior.” This makes some nurses also question how representative the diaries are: “I wonder, how realistic is it, because the stress that comes with filling in the diaries also makes symptoms different than they normally are.” Third, some patients in the early stages struggle with accepting the diagnosis: “Patients visit the neurologist and he says: “you have Parkinson’s.” Then people think, that cannot be true, nothing has been done. That’s why many patients keep on wondering: is the diagnosis true, because we cannot do imaging.”Three main “pains” were identified among Parkinson nurses. First, some patients find it difficult to reflect on and understand their own symptoms. Different nurses mentioned: “I could mention tens of patients of whom I think: yes, that would actually be nice to make it insightful: what really happened and discuss that together.” About the patient who panicked during off phases, the nurse said: “It could help her if she could say: last week I had such an attack, and that we can then discuss: it really looks like an off phase, which is confirmed in a graph.” Self-awareness about the cause of falls may help the patient to help himself: “Then you could say: you should have stood up less quickly. If someone has a gap in his memory and does not know it anymore, they also cannot help themselves.” Nurses also emphasized that wearable sensors could make it easier for patients to tell their story: “They already have less dopamine, so a conversation costs a lot of energy. I can imagine that it helps if you already have some numbers and the patient does not have to tell the whole story.” In addition, they saw a role for wearable sensor to activate patients: “If a sensor gives certain stimuli for loss of initiative, that could unburden caregivers a little because he does not continuously have to stimulate the partner and be in the caregiver role, and can be more of a partner.” Last, having objective measurements could help with accepting the diagnosis: “Often patients feel like: is the diagnosis true, because I cannot confirm it with imaging. This  is something that patients can really see, something that is being measured.”The nurses thought that wearable sensors could help to increase the patients’ self-awareness. One nurse mentioned: 3.5.4.“Before I visit my neurologist, I always make one sheet with what I want to say, so I do not forget anything.” Some patients regularly used an online questionnaire  to identify the biggest changes in their symptoms compared to the last appointment. For some patients, the partner’s support during consultations was very important: “I have a very good partner who joins me with a memory like an elephant.” Others did not feel the need to track their Parkinson symptoms, either because their situation was relatively stable or because they felt like their disease course was too unpredictable to identify useful patterns: “I started with it, only for me every day is different. There is no logic to it, so at a certain point I felt like: what’s the use of keeping track of it.” Identified facilitators (“gains”) for communicating with healthcare providers about symptoms included (1) an open attitude to using self-collected information: “My neurologist says: “I am happy you brought a form, because I am depending on you.” She can only help if I say something,” and (2) whether their healthcare providers were easy to approach: “We have the best feeling with the Parkinson nurse. She maybe does not know 100% about my patient record, but she does have eye for the social aspects and thinks with you if you say: “I went on a holiday and it was so nice.” It feels closer.”How patients communicated about their symptoms with healthcare providers varied per individual. Some patients already made notes about the most important changes or questions before meeting with their healthcare providers: “I tried it and I thought it was much too subjective. You need to give a number, and if I selected a 6 last time, I do not remember why I choose a 6 then.” In addition, patients who wanted to try a smartphone applications, found it difficult to know which one was reliable: “If I look for Parkinson’s in the app store, there are so many applications. I do not know which ones are any good.” Second, some patients thought it was burdensome to self-track their PD, either because it required a lot of time or because they did not want to focus too much on their PD: “I am very eager to learn, so I thought I want to know everything about the disease. It made me very sad day by day, I did not sleep anymore, and I became depressed.” Third, some patients had the impression that their care providers are not open for self-collected information: “The neurologists inspects how I walk when I come in and looks at my facial expression and says: you are doing well. That is what he relies on.” Another patient mentioned: “I know the Parkinson Monitor, but the neurologist thinks it’s nonsense and he does not cooperate, so then there is no point.” Patients thought that the limited time for consultations was an important factor in this.Three main “pains” were identified with respect to the communication about symptoms with care providers. First, some patients thought it was difficult to collect reliable information to share. The Parkinson Monitor was considered as too subjective: “Imagine that you agree during a consultation that the medication needs to be increased because you are too passive. Then you can see during the next 2 weeks: has it changed or not. Now you wait for 3 months until you go back.” Similarly, one patient thought that it could help with adjusting the intraduodenal levodopa infusion: “If you get it, you need to go for a week to the hospital to see: how are the settings. That should work much better with such a device.” Patients also saw benefits for non-pharmacological interventions: “With walking, sometimes it goes smoothly and sometimes I think: “flap, flap, flap.” So then I think: we should analyze the movements with sensors, and then get an advice which exercises you should do.” Second, some patients thought that it could help healthcare providers to proactively signal changes that need attention: “Then they might be able to see in the data in an earlier stage: something is not going well, maybe we should schedule a check-up earlier.” Third, sensors could facilitate the communication during consultations: “I think that they are even more prepared for what happened, that they can read in before the appointment. Then you do not need to mention everything, because everyone is up-to-date.”Patients who were interested in symptom monitoring, agreed that wearable sensors could provide more objective information, which would be useful to share and discuss with healthcare providers. First, patient thought that it could help to find the right treatment, for example by adjusting the medication schedule more quickly: 3.6.“It may be difficult for patients to put the sensors on and take them off,” one physiotherapist wrote, and one nurse mentioned: “Patients often have problems with fine motor skills.” Cognitive problems were a common concern as well: “Patients may forget that we agreed to wear the device, or how to use the device,” according to one of the nurses. A physiotherapist mentioned: “Some patients with Parkinson’s disease are not teachable anymore.”The most frequently identified barriers to using wearable sensors among healthcare providers are shown in “It is important whether it actually reflects the condition of the patient” (neurologist), and “A sensor only gives objective data if it is really good. A system of a few years ago could not detect biking, then it does not work, then it is not a complete, objective picture” (patient). Some healthcare providers would only trust the measurements if recognized by the patient: “I would trust it if you look at it together with the patient and he says multiple times: yes that is true, I also experience it that way” (nurse). A neurologist noted that he needs to able to rely on measurements, also when findings are unexpected: “On the other hand, if it completely matches one-on-one with what I already thought myself, then the added value is of course zero” (neurologist). Some healthcare providers emphasized the importance of transparency: “I think it’s difficult if you cannot look under the hood. If it does not seem to match with what you think about this patient, you cannot really see why it does not match.” The scope of what could be measured with wearables was also a concern: “Only limited measurements are possible: for example one arm or one symptom” (neurologist), and “We talk a lot about cognitive problems. The sensors measure movements, so there is already some friction” (physiotherapist).Both patients and healthcare providers, neurologists in particular, emphasized the importance of reliable and well-validated sensor-based outcomes: The devices will not always be used by the patient, so information will not be complete, which can make patients very nervous” (nurse), and “Patients may take them off and forget to put them on again” (physiotherapist). Some healthcare providers thought that the patients’ motivation to wear the devices is an important hurdle: “It asks a lot of discipline from patients” (physiotherapist), and “Patients must benefit from it themselves” (neurologist).Another common theme was the compliance with using wearable sensors: ““Reading out the sensors requires extra time which is not there, or it comes at the expense of treatment time,” and a neurologist expressed the concern that it may raise more questions: “Then they tell me in the app I see this and that. Cannot you increase the medication even more?” (neurologist). In addition, healthcare providers stressed the importance of the subjective experiences of patients: “You do not treat graphs, but patients. So how the patient eventually experiences it remains most important” (nurse), and “It is very important that patients can indicate via a simple button how they feel from time to time, for example whether they are feeling comfortable, miserable, stressed, etc. That is important for the interpretation of the data. The combination of subjective and objective data is important” (neurologist). Last, some participants mentioned the risk that self-monitoring can become an obsession, in particular for patients with PD: “A disadvantage could be that you let your life be ruled by the sensors. I would not be happy with that” (patient).Healthcare providers were also concerned about the time investment and costs. A physiotherapist wrote: In the focus groups, additional themes regarding the design and implementation of wearable sensors were identified . Below we highlight highly prevalent themes; for all identified themes and illustrative quotations we refer to 3.6.1.“On the long term, I think we will mainly use it for the vulnerable patient with little informal care, or with cognitive problems when you think, I cannot get a good impression of how the patient functions at home, and that you have doubts about the medication or activities of such a patient” (neurologist), and “It is particularly important for patients living by themselves and in nursing homes: here we often do not have a clear picture of the patients’ functioning” (nurse). Both patients and healthcare providers also mentioned that there need to be specific goals and the use of wearable sensors should not be standard: “I find everything that’s standard a bit tricky. In contrast, we aim for personalized care, and if you say: we will do certain things as standard when they have Parkinson’s for 5 years, I would hate that.” A patient mentioned: “Yes, the data are very nice, but you can quickly drown in all the information, so you need to have a thread or a goal. I have a goal: stay active.”Healthcare providers mainly saw benefits for specific target groups: 3.6.2.“Otherwise patients focus on the exercise and not on the environment and why he stands up. He stands up for a reason, not to do that test, but he needs to go to the toilet. You can measure that in a very natural way” (physiotherapist), and “At the end of the day you would still do artificial measurements then. That’s not what it’s really about. They are still snapshots” (neurologist). Some patients were also more enthusiastic about passive monitoring: “I think you should not do extra movements for it. It needs to measure automatically, I should not have to say: now you measure me and now you do not.” Physiotherapists were interested in active tasks if these also served as an exercise: “It can be valuable if you say: I think this is an important exercise for this patient to repeat often.” Patient expressed the desire that the schedule of tasks should be personalized and that sensors should sense when the patient is not available: “A smart sensor knows from your movements that you are in a car, so it would be smart if it does not send you an alert then.” Nevertheless, some patients doubted whether they had the discipline to do repetitive tasks: “In every test that I participated in I always needed to do the same thing. Counting back from 100 with steps of 7, always the same test. Once in a while you should think about something else.” Some healthcare providers thought it would be valuable to combine the sensor data with subjective self-reports: “It is very important that patients can use a simple button from time to time to indicate how they feel: for example if they feel good, miserable, stressed, etc. That would really help interpreting the data. The combination of subjective and objective data is important” (neurologist).Because of the need to obtain (continuous) insights into how the patients move in real-life, healthcare providers generally preferred passive registrations in the background over performing active tasks: 3.6.3.“Well, it feels a bit like big brother is watching you, I think a patient may experience that as unpleasant. It depends a little bit on how you measure it. You are already a patient and if you are also being monitored continuously, I can imagine if a patient would not like that” (neurologist), and “It should not work like: let us have a look at how mister X is doing tonight, whether he is sitting on the couch or he is doing his exercises. That is a bridge too far for me” (physiotherapist). Patients were generally very open to share information with their healthcare providers, and mainly emphasized the positive aspects of data being available: “Imagine that something happens and I have a question, then he can have a look at how I am doing. It is available. It is not a bad thing if it is available for people you trust.” Patients did emphasize they would like to have control on who has access to the data: “If I can say who and when, then I think it’s fine. My physiotherapist can see it for sure, because I see him every 14 days, maybe someone else not.” Some patients mentioned that data should not be shared with insurance companies. According to healthcare providers, it is important to give detailed information to PD patients and their caregivers about monitoring tools, by whom and how they are used, and to obtain informed consent. The nurses emphasized that respect for the patient’s autonomy is essential, and it needs to be evaluated in each individual case if and what kind of home monitoring is useful and desirable: in some cases, directly transferring the data to healthcare providers could help signaling problems and be experienced as supportive, whereas in other cases, this might be experienced as not respecting the patient’s privacy.Healthcare providers were generally more concerned about privacy than the patients themselves: 4.4.1.This mixed methods study provides detailed information about the perspectives of patients, physiotherapists, Parkinson nurses and neurologists on monitoring PD in daily life. One third of the patients had self-monitored their PD symptoms in the past year, most commonly using a paper diary. Key motivations for monitoring among patients are sharing information with healthcare providers, obtaining insight into the effect of medication and other treatments, and following the long-term disease progression. Key barriers are not wanting to focus too much on having PD, symptoms being relatively stable, and lacking an easy-to-use tool. Symptoms of interest differed between patients and healthcare providers; patients gave a higher priority to fatigue, problems with fine motor movements and tremor, whereas healthcare providers more frequently prioritized balance, freezing and hallucinations. PD patients as well as healthcare providers were in general positive about using wearable sensors to improve PD care and self-management, although the specific context and expected benefits varied considerably between the different stakeholders. For each group we provide further ideas about one promising context where wearable sensors could add value: treatment of balance and falls (physiotherapists), self-management and patient education (Parkinson nurses), treatment of response fluctuations (neurologists), and communication with healthcare providers (patients). Last, we discuss barriers for the use of wearable sensors as identified by the different groups , as well as suggestions for the design and implementation of wearable sensors.4.2.We observed a large heterogeneity among PD patients and healthcare providers regarding their views on monitoring PD, which underlines the need for solutions tailored to specific contexts. The observed heterogeneity is reflected in multiple ways. First, although patients and healthcare providers share interest in the classical motor symptoms of PD, which is in line with earlier studies , 14, intSecond, healthcare providers expressed different ideas about how monitoring PD using wearable sensors could contribute to improving PD care. Wearable sensors were not only seen as tools to support treatment decisions and proactively signal problems, but also as tools to educate patients, increase their self-awareness of symptoms and triggers, increase their participation, and support treatment compliance. The latter could be particularly relevant for treatments that require a substantial active contribution from patients such as physiotherapy exercises, where wearable sensors could help by visualizing the achieved progress, or even by providing real-time feedback about the execution of exercises . In addiThird, patients expressed different motivations for self-monitoring their PD. In addition to sharing information with healthcare providers, patients also saw added value of self-monitoring independent of their relationship with healthcare providers. Many patients expressed an interest in gaining more insight themselves into the course of their symptoms and into the effect of medication or other interventions. An important perk of this was the opportunity to feel more in control, and being able to optimize aspects of their lives themselves (self-design), which is in line with findings of Riggare et al. . Also, sTaken together, we conclude that it is unrealistic that a one-size-fits all monitoring solution will be able to address the different needs of PD patients and healthcare providers involved in PD care. Instead, we believe that different PD monitoring solutions should be designed to address specific needs experienced by specific target groups of patients and healthcare providers , with cl4.3.Patients and healthcare providers expected that the use of sensor-based monitoring tools will impact their interaction. On the positive side, being able to discuss measurements together could serve as a memory aid, trigger patients to share their experiences, and help to focus the conversation. Jointly discussing measurements was also seen as a way to increase the patients’ self-awareness. In addition, by reducing the dependence on in-clinic observations to evaluate the severity of symptoms, wearable sensors provide opportunities for telemedicine , in whicHowever, the use of sensor-based monitoring tools also comes with challenges for the communication between patients and healthcare providers. Focusing too much on numbers was identified as a potential risk. Healthcare providers agreed that the subjective experiences of the patient remain vital to guide treatment decisions, as wearable sensors cannot measure the limitations experienced by the patient. This stresses the importance of providing patients ample opportunity to comment on the measurements, and only act upon them if jointly agreeing on the conclusions, which is in line with findings of the focus group study of Ozanne et al. . Future 4.4.Despite an increasing availability of sensor-based monitoring tools, both our survey and the survey of Mathur et al.  showed t4.5.This study has a few limitations. First, a relatively small number of patients and healthcare providers participated in the focus groups and interviews. Because we did not aim for data saturation, the identified themes cannot be assumed to be exhaustive, also given the observed large variation in individual perspectives. Instead, our aim was to enrich the findings of the online surveys by further exploring promising contexts where wearable sensors could be of added value. Second, the organization of PD care in some other countries differs from the Netherlands, where, for example, PD patients are often seen by physiotherapists and Parkinson nurses, in addition to neurologists. Therefore, the roles of different healthcare providers should be considered when translating the findings of this study to other countries. At the same time, the Netherlands lends itself well for studying innovations in PD care, because of the nation-wide network of healthcare providers specialized in PD . Third, Strengths of this study include the combination of surveys with subsequent focus groups, and the involvement of both patients and different healthcare providers. The alignment of the survey questions allowed for a comparison of perspectives, highlighting interesting differences between the different stakeholder groups. In addition, by not limiting the input of participants to the development of a specific solution, we aimed to identify universal needs, not limited to what is currently technically possible. Finally, we aimed to provide a nuanced view on the potential of new monitoring solutions, by not only focusing on motivations for self-monitoring and expected benefits of wearable sensors, but also on barriers and expected limitations. More insights into the different perspectives on symptom monitoring and wearable sensors of all stakeholders involved will hopefully contribute to the successful design and implementation of PD monitoring solutions.The anonymized raw data supporting the conclusions of this article can be shared by the authors upon request, without undue reservation.The studies involving human participants were reviewed and approved by Commissie Mensgebonden Onderzoek, regio Arnhem-Nijmegen; file number 2015-1776. Participants in the online survey study provided informed e-consent; participants in the focus groups and interviews provided written informed consent.LE, BB, and MM were responsible for the conception of the research idea and design of the study. BB and MM obtained the funding for the study. LE and MM wrote the research protocol and obtained approval from the ethical committee. LE developed the surveys and the topic guides for the focus groups and interviews. LE and JP collected the data, performed the analyses, and drafted the initial manuscript. MM and BB helped with interpreting the results, and thoroughly reviewed the manuscript. All authors read and approved the final version of the manuscript.This work was financially supported by the Michael J Fox Foundation (grants #10231 and #020425), UCB Biopharma, Stichting ParkinsonFonds, Netherlands Organization for Scientific Research (grant #91215076), and by the Dutch Ministry of Economic Affairs by means of the PPP Allowance made available by the Top Sector Life Sciences & Health to stimulate public-private partnerships (grant #TKI-LSH-T2016-LSHM15022).LE, JP, and MM received funding for this work from the Michael J Fox Foundation, UCB Biopharma, Stichting ParkinsonFonds, the Netherlands Organization for Scientific Research, and by the Dutch Ministry of Economic Affairs by means of the PPP Allowance made available by the Top Sector Life Sciences & Health to stimulate public-private partnerships. BB serves as the co-Editor in Chief for the Journal of Parkinson’s disease, serves on the editorial board of Practical Neurology and Digital Biomarkers, has received fees from serving on the scientific advisory board for Biogen and UCB , has received fees for speaking at conferences from AbbVie, Biogen, UCB, Zambon, Roche, GE Healthcare, and Bial , and has received research support from the Netherlands Organization for Health Research and Development, the Michael J Fox Foundation, UCB, AbbVie, the Stichting Parkinson Fonds, Hersenstichting Nederland, the Parkinson’s Foundation, Verily Life Sciences, Horizon 2020, the Topsector Life Sciences and Health and the Parkinson Vereniging, outside the submitted work. BB does not hold any stocks or stock options with any companies that are connected to Parkinson’s disease or to any of the topics in this manuscript.All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.


In 2018, Canada legalized recreational cannabis use with the purpose of protecting youth and restricting access. However, concerns have been raised that this objective has not been met as rates of cannabis use among youth aged 16–24 have not declined. Youth cannabis use is associated with various adverse effects including psychosis, anxiety, depression, suicidality, respiratory distress, cannabinoid hyperemesis syndrome, and intoxications. Service providers play a crucial role in addressing youth cannabis use. This study aimed to understand Ontario service providers’ perceptions, practices, and recommendations on youth cannabis use.This mixed method study included a survey and two focus groups. The survey was distributed to mental health service providers serving youth aged 16–24 across Ontario who were given the option to participate in a focus group. The survey included closed and open-ended questions regarding perceptions, practices, and recommendations, while the focus groups explored these categories in greater depth. Descriptive statistics were used to analyze close-ended questions and interpretative content analysis was applied for open-ended questions. Focus group data were analyzed using thematic analysis.The survey was completed by 160 service providers and 12 participated in two focus groups. Regarding perceptions, 60% of survey participants agreed with legalization, 26% had a strong understanding of medical versus recreational cannabis, 84% believed that cannabis has physical and mental health risks, and 49% perceived stigmatization. Less than half of the survey participants reported screening or assessing cannabis use, 16% stated they are highly familiar with treating cannabis use, and 67% reported that they rarely work with families. Subthemes identified in the focus groups under perceptions included normalization and stigmatization, harms for youth, and stigma, racism, and discrimination. Subthemes under practice included cannabis not being the primary focus, challenges with screening, assessment, and intervention, and referral to specialized services. Both the survey and focus group participants recommended increasing public education, enhancing service provider training, improving regulation and policies, reducing stigma and minimization, improving service access, and providing more culturally responsive services.Youth cannabis use in Canada remains a significant public health concern, necessitating a more comprehensive plan to protect Ontario youth and reduce associated harms. Canada has one of the highest prevalence rates of cannabis use in the world , and canSince legalization came into effect, the rates of cannabis use in Canadian youth have increased –9 and thA study examining patterns of cannabis use among Canadian youth found that there is a high propensity for youth using cannabis at baseline to switch to multimode use  or increase their use if already engaged in multimode use . Some stSeveral studies have reported that one of the most frequently reported motives for cannabis use by youth is coping with a range of concerns including feeling depressed and anxious , 16, 17.Early cannabis initiation and use are associated with increased mental health and substance use challenges in adulthood. Hawke et al.  found thThere has been ample substance use research showing the relationship between an individual’s knowledge or perceptions of risks and how this influences their substance use –41. One There is a call for more education about cannabis use in youth, cannabis use prevention, early intervention, and treatment initiatives , 42, as There has been limited research on Canadian service providers’ perceptions and practices related to youth cannabis use. There is also limited information on how professional training programs  are preparing trainees for practice. There have been a few studies evaluating training and education programs, but they are either not youth-specific (e.g. see ) or theyThis study was conducted using a mixed methods convergent design to achieve a more complete understanding of the research problem through anonymous survey data and two focus groups. We followed a six-step framework developed by Creswell & Hirose  for condA purposeful sampling strategy that included both convenience and snowball sampling was used for this study. This type of sampling allows researchers to obtain information from participants who are knowledgeable in the phenomenon of interest, share similar characteristics, and are easily accessible , 51. EliData collection for the online survey occurred from January to May 2022. We used Qualtrics, an online survey tool, to build the survey and collect the data . The onlPilot testing is recommended to ensure the survey directions and questions are understood by participants, and to also elicit feedback on the appropriateness of wording . We piloThe survey data were exported from Qualtrics to Excel, and three members of the research team analyzed the survey data . For closed responses, we analyzed the data using descriptive statistics, and for open-ended questions, we used interpretative content analysis , 58. TheIn the first phase of the focus group analysis, two RAs (SM & CKYL) and the PI (TK) familiarized themselves with the data by reading the transcripts and writing memos. We created a codebook that provided detailed descriptions of the codes with exemplars. In the second phase, the RAs identified initial codes that emerged from their review. This was a recursive process that involved constant movement between generating and defining codes, reading through transcripts, and adding and refining codes as needed . The traA total of 160 service providers completed the survey , 21% from Southwestern Ontario, 14% from Eastern Ontario, 10% from Northeastern Ontario, 7% from Northwestern Ontario, and 4% who identified living in more than one region. In terms of racial identity, more than two-thirds identified as white (69%), followed by Black (8%), mixed or biracial (8%), South Asian (3%), Indigenous (3%), Middle Eastern (2%), East/Southeast Asian (1%), Latinx (1%), another race category (3%), and 4% did not respond. Two-thirds of participants (66%) had their primary employment setting in the public sector, 28% were in a private setting, and 6% were in both public and private settings. The participants’ work settings included community agency (29%), private practice (24%), hospital (15%), primary care clinic (7%), residential treatment centre (2%), university (1%), high school (1%), more than one setting (16%), and other settings (5%).All participants completed the survey, which consisted of 39 questions under categories related to perceptions, practices, and recommendations on youth cannabis use. In this section, we present some of the most salient responses to the quantitative survey under three categories: perceptions, practices, and recommendations. More than half of the participants (60%) agree or strongly agree with cannabis legalization, 20% disagree or strongly disagree, while 20% of participants neither agreed nor disagreed about legalization. Less than half of the participants (43%) disagree or strongly disagree with the idea that cannabis is a gateway drug for use of other drugs and alcohol for youth, more than one-quarter (26%) agree or strongly agree, and 28% were in the middle. Only 26% of participants reported having a high level of familiarity with the differences and similarities between medical and recreational cannabis use, 49% reported a moderate understanding, 24% reported a low understanding, and 1% stated that they do not know. In terms of understanding the link between cannabis use and mental health, 48% of participants reported a high level of understanding, 49% reported a moderate level of understanding, and 3% reported a low level of understanding.Most participants (84%) believe that cannabis use poses risks to youth physical and mental health, and almost two-thirds (65%) of participants believe that cannabis is harmful for youth. Regarding the question on benefits of cannabis use, 36% of participants do not believe that cannabis has benefits for youth, 27% believe that there are benefits, and 34% neither agree nor disagree about benefits. More than two-thirds of participants (68%) believe that cannabis use in youth is a serious public health concern and 36% believe that youth cannot use cannabis regularly without developing a cannabis use problem, 34% believe that youth can use cannabis regularly without developing a problem, and 27% neither agree nor disagree with this statement.More than two-thirds of participants 72%) believe that there are inadequate services for youth using cannabis, 68% do not believe that addiction services are adequately integrated with mental health services, and 28% believe that cannabis use in youth should be treated primarily by an addiction specialist. Most participants (87%) reported having a high to moderate level of familiarity with the impact of social determinants of health for youth using cannabis, and 79% believe that services for youth using cannabis need to be culturally adapted. Most participants (89%) believe that families are an importance source of support, and 76% believe families should be involved in services and treatment for youth using cannabis. In response to an open-ended question on service providers’ perceptions of how stigma affects youth using cannabis, almost half of the participants (46%) perceive that youth using cannabis are stigmatized, 38% do not think youth cannabis use is stigmatized, 11% were unsure, and 5% did not respond. Table % believeA little more than one quarter (26%) of participants reported a high level of familiarity in screening or assessing cannabis use, while 31% reported a low level of familiarity. Most participants (86%) believe that they have a role and responsibility to screen or assess cannabis use in youth. However, less than half (48%) of participants reported that they often screen or assess cannabis use in youth, 27% do so sometimes, and 23% rarely or never. In terms of treatment of cannabis use, 16% reported a high level of familiarity, 45% moderate, 37% low, and 2% did not respond. Only 16% of participants reported working with families often, 67% sometimes or rarely, and 15% never work with families. When asked about the screening or assessment method, there was a wide range of responses: 40% of participants reported asking structured interview/assessment questions to youth and/or families, 22% wait for the youth or family member to raise the topic before asking about cannabis use, and only 10% use a standardized instrument. Table In response to an open-text box question, participants provided recommendations related to youth cannabis use, which were grouped in six categories: (1) increase information on youth cannabis use including risks and harms, (2) enhance training and education of service providers, (3) improve regulation and policies to protect youth, 4) reduce stigma and minimization, (5) use anti-racist, diversity, equity, and inclusion approaches in addressing cannabis use in youth, and (6) increase equitable access to mental health and addiction services for youth and their families. Table  reduce sA total of 12 service providers participated in one of two focus groups, with four participants in one focus group and eight in the other. Most focus group participants were social workers (n = 11), and one participant was a child and youth worker. In terms of years of experience, 33% of service providers had less than five years of experience working in the field of mental health and addictions, 25% with 6–10 years of experience, 25% had 11–20 years of experience and 17% had more than 21 years of experience. A high percentage of participants identified as women (75%), 17% identified as gender diverse including nonbinary, trans, gender fluid or gender queer, and 8% identified as men. Participants ranged in age, with 8% between 20–29 years old, 58% between 30–39 years old, 17% between 40–49 years old, and 17% between 50–59 years old. In terms of racial identity, most participants identified as white (83%), followed by Black (8%), and mixed or biracial (8%). Participants spanned four geographical regions of Ontario, with 58% in Central Ontario, 17% from Southwestern Ontario, 8% from Eastern Ontario, and 8% in both Northwestern Ontario and Central Ontario. In terms of work setting, 75% of participants were in the public sector and 25% were in the private sector. Half of the focus group participants (50%) worked in community agencies, 17% worked in hospitals, 17% worked in private practice, 8% were in both hospital and private practice, and 8% were in other settings . Table perceptions, practices, and recommendations. These themes consisted of several subthemes that emerged during the analysis .Under the theme of This is an age, a time of a young person’s life where they’re trying things. I came home with piercings; I came home with different hair colours…we have to remember when we were young…the wild things that we all did, and we all came out okay. (P5)Service providers also noted that some youth believe that cannabis is more helpful than medication. One participant mentioned, “A lot of people feel way more comfortable smoking and using marijuana than they would taking anti-anxiety or anti-depressants, feel that it’s more natural and that it helps them more” (P12). Additionally, some service providers normalized cannabis use as a typical part of development for youth and drew comparisons to their own lived experiences:Another service provider highlighted biases among social workers who minimize youth cannabis use based on their personal experiences. This service provider explained, “There’s kind of a conflation of, like, oh, well, I use [cannabis] and there’s nothing wrong with it, so it’s fine for my teenage clients who use” (P3).A lot of the clients that we see are quite heavy into other substances that tend to have more immediate and negative side effects, like alcohol and harder drugs, and some youth will smoke cannabis instead of drinking. And from a harm reduction point of view for us, like we know that long term, that can be really detrimental for their brain development, amongst other things, but in the here-and-now, a lot of them, if they go out and get drunk, they can’t come to school, or they end up interacting with police, or they end up in the hospital, or they end up attempting suicide. Whereas if they smoke up, they come to school and they just hang out with their friends…from that point of view, it’s not great, but it’s less harmful than some of the other things they could be doing. (P11)Some service providers expressed that, in comparison to other substances, cannabis is perceived as less harmful. One service provider provided an explanation:The second subtheme under the perceptions theme is concerns about risks and harms. Most service providers expressed concern about the adverse effects of cannabis use, particularly in relation to brain development. One participant stated, “Youth ages 16 to 24, that’s such a crucial time pf their lives when their brains are still really forming” (P6). Service providers also worried about increased anxiety, psychotic episodes, exacerbation of eating disorders, and risk of addiction or misuse of other substances. Another participant emphasized, “the risk of developing serious mental health concerns related to cannabis use is much, much higher before the age of 25” (P9). Additionally, service providers expressed concerns about cannabis use preventing youth from learning how to regulate and cope with intense emotions, as well as its impact on motivation and “falling behind in school” (P3). One participant mentioned that cannabis use can also increase risk-taking behaviours and create conflict in family relationships, “I've seen it a lot in the parent-teen dynamic, where it’s created quite a lot of strain in the relationship” (P3).perceptions theme is stigma, racism, and discrimination. Service providers described mixed perspectives related to stigmatization of cannabis use. While some believed that the “stigma around cannabis use has declined a lot,” (P9) many acknowledged that youth experience stigma differently depending on their intersectional identities. One service provider shared their perception:I don’t actually see [stigma] impacting them that much, and I think that has more to do with the fact that they have so many other aspects of their lives, like who they are, that are impacted by stigma, that cannabis is kind of, like, the least of their stigma concerns. So, the stigma that impacts them is more around race or more around their age, or more around the other substances that they might be using, and not whether or not they’re using cannabis. (P11)The final subtheme under the I have seen in my practice that when other young people use cannabis, there’s a question of what is going on in their life and they’re met with compassion, they’re met with, okay, connecting them with a counsellor and mental health supports, and then I’ve seen racialized children streamlined into the criminal justice system. They are not given extrajudicial measures, meaning that they are not met with a practice of, okay, how about we not give them an arrest that can lead to a criminal record. (P5)Another service provider discussed how youth of colour are coping with structural and systemic racism, leading to inequitable treatment across various services and systems:So, somebody that smokes cannabis on a regular basis, you know, if they’re a person of colour, or if they’re a female, they may get treated more - what’s the word? They may be treated differently, but they may say, well, that’s not how a girl should behave or it’s worse for a female, say, to look high or to behave or to act like they’re high, than it is for a man, and that increases, let’s say, the perception of that injustice or that kind of differential treatment between males and female. (P7)Another service provider highlighted stigma occurring at the intersection of ethnicity, gender, and substance use:Stigma related to cannabis use and socioeconomic status was identified, although service providers acknowledged that cannabis use “does not seem to be in any one place. It’s kind of kids from all economic areas” (P10). However, they noted that youth with lower income “do not necessarily have [treatment] resources available to them” (P2) and “may be more highly stigmatized because of their income” (P3). One service provider also described stigma towards youth with learning disabilities who use cannabis: “I’ve also seen stigma a lot with clients who have learning needs, so like learning disabilities oryouth who are on education assistance plans in the school…they’re treated differently” (P8). Another service provider stated, “practitioners just lose the strengths-based approach when we find out that young people use cannabis” (P1).[Youth] was sitting on a bed, waiting to speak to a doctor, and there were two mental health crisis nurses chatting together, just outside [youth’s] closed curtain of [youth’s] bed…a really derogative statement was made…‘Those are a waste of humanity’… as if their humanity has less value or less worth…There is a lack of education, a lack of sensitivity and empathy, and mostly fear. Fear is present because of the lack of education and training…And so, this kind of idea that we can be quick to dispose of those people or get them out of our sight, because they’re scary and they’re dangerous. So, to me, this to me is like a failure of our society. (P4)Another service provider spoke about stigma-related “challenges in a big institution…in particular, where the medical model is the dominant mode of practice” (P4). They described a youth’s experience in a hospital emergency room:practices had three subthemes, and the first described how cannabis is not a primary concern for youth, service providers, and outpatient services. Most service providers noted that cannabis “doesn’t tend to be the presenting issue” in their mental health practice when there are “complex mental health, anxiety, depression…ADHD…and stopping using cannabis is kinda the last of people’s concerns” (P12). According to one service provider, “the kids that I see have to identify what goals they want to work on. So, unless somebody specifically tells me, at some point, that they want to change something about their cannabis use, it’s not necessarily the focus” (P6). Another service provider stated, “It is not the focus of the counselling in the mental health outpatient department of the hospital…it kind of comes up as almost like a sidebar. I'm aware that I’m not asking them to expand a lot on that” (P4).The theme of practices involved challenges with screening, assessment, and interventions. Most service providers described not screening for cannabis use and not including cannabis use (or other forms of substance use) as a standard part of their assessment. They indicated that they expect youth to raise this if it is a presenting concern, as noted by this service provider: “Young people are very honest. So, I’ve never had to assess, they just outright have said it” (P5). One service provider stated that they do not offer counseling that addresses cannabis use: “The talk that we have about cannabis is a side thing. I don’t offer direct counselling or support” (P7). While Motivational Interviewing (MI) and harm reduction were identified as guiding models or approaches used by service providers, these appeared to be applied sporadically. For example, one service provider stated that they provide “Motivational Interviewing in general, to kind of see what [youth] thoughts are on the situation and kind of, you know, look at the good, the bad, and all the rest” (P2). This service provider also explained that “you can’t be abstinence-based when it comes to offering youth work” and that this is “denying them service” and the “only way you’re gonna engage them in service” (P6). However, there was a lack of clarity on how harm reduction guidelines are incorporated in practice. One service provider stated, “I'll do a quick, kind of, safety spiel to make sure that they know what some of the harms are” (P10). Another added, “what I generally do is kind of try and just provide a bit of psychoeducation in terms of harm reduction” (P12). A few service providers described the importance of psychoeducation and “supporting the youth in the choices that they want to make around their cannabis use” (P11). Another service provider explained that it is important to “take a look at [youth’s] cannabis use, and how it might have impacted them coming to hospital and just providing a little bit of education” (P2). Some service providers underlined not having the necessary knowledge and skills to work with neurodiverse youth using cannabis: “I'm currently finding it a struggle to support tapering or support, like, even working towards abstaining with cannabis use with clients with autism” (P8).The second subtheme under practices focused on referral to specialized services. Many service providers indicated that they refer youth who would like to address their cannabis use to specialized services due to low confidence in treating this directly. One service provider stated, “If we recognize that it’s a situation that the client wants to get out of, and it’s become abuse, not just use, recreational, my confidence is so low, I'd refer them out, simply” (P7). Another shared, “I actually don’t know that much and so, I do have a tendency to refer people out. But you know, I think it would be really good to feel a bit more competent” (P1). This lack of confidence was described by another service provider:There is still the idea that it’s someone else over there who can handle it better, or who really has the real skills…if we are seeing people [who] are identifying cannabis or other drug use as a problem, we might make a referral to [name of local agency], which is like our local agency that does addiction-specific counselling, instead of, perhaps, feeling confident to educate the individual about what we know about cannabis use and risk. (P4)The final subtheme under recommendations, and it included four subthemes, with the first focusing on the need to increase training for service providers. There was a unanimous call for increased training and education on youth cannabis use by all service providers: “I think the problem with cannabis, is that everything is very vague…for me, the biggest barrier in feeling competent in addressing it, is knowing the specifics, or even the specifics being known, in general, from larger scientific community” (P7). Most service providers expressed a desire to learn more and underlined that this would improve their practice, as stated by this service provider: “I’d be very interested in learning a little bit more on the neurological impacts of cannabis use, on developing brains, but also on why there is that connection between cannabis and psychosis or paranoia. Sometimes if you can explain the ‘why’, it’s more effective” (P6). Most service providers indicated that increased training would enable them to provide more psychoeducation to youth who report that cannabis is beneficial. As noted by one service provider:I sometimes get a little confused when, you know, young people are talking about using cannabis to deal with anxiety…a 17-year-old walks in and says, ‘yeah, I got anxiety, I just get high’. Like, they don’t know - I don’t know if that’s helpful - I guess it could be, if you happen to get lucky and you have a strain that works for you. (P10)The third theme was We’ve been able to study [alcohol] and gain all this knowledge in terms of, like, withdrawal skills and how do you kind of predict different behaviours based on intoxication levels and you can use that as a tool to kind of teach your patients around, like, moderation and kind of education in that way. There’s not really an equivalent that I’m aware of for cannabis. (P2)Some participants expressed confusion about the different cannabis products on the market and not knowing the various effects of each one: “They can help to do this or do that, but can they harm? In terms of understanding what are the different strains, what are the different intensities, what cannabinoid is responsible for what?” (P7) Some service providers were unaware of existing low-risk guidelines for cannabis and underlined the need for “more education on how to safely use cannabis and who is supposed to be using cannabis” (P5). Many of the service providers compared cannabis with alcohol in terms of safety guidelines, explaining that they would like to see more tools to educate youth about safe use:recommendations highlighted the critical need to increase public education on cannabis use and its effects on youth. Most service providers expressed frustration about the “lack of education around legalization and particularly, the lack of discussion and education with this age group” (P4). As explained by one participant, “I don’t think, again, this age group is being educated about the actual impact on their development. I'm not sure parents know either. As a parent of a teen, I don’t think I know everything I should” (P4). Some service providers recommended that schools are an important place where information can be given at a younger age. For example, “we have an initiative with our school boards to provide substance use education as a part of their health classes. But we’re now seeing that maybe that needs to go down to lower grades, to provide education sooner” (P8).The second subtheme under The need to improve access to addiction and mental health services was a third subtheme underlined by most service providers. Some service providers described not being able to refer youth to services within their own communities, particularly in remote or rural areas of Ontario. “We’re having to send youth really far places to get day treatment, at hospitals that provide it, outside of our region…I'm thinking more funding and policies around, like, interventions in more community settings, I think, would be really helpful” (P8). According to one service provider, “we have, like, wait times for mental health supports going into one year, one year and a half. And so, what are they supposed to do in between that time?” (P5).all aspects of service delivery are inclusive and equitable. One service provider described the significantly negative impact of agencies or hospitals requiring youth to complete forms that are not using gender-inclusive language: “The intake form only had M or F written down…I’ve had young people tell me ‘I'd rather die before going to these places for help’” (P3).The final subtheme focused on the need for more culturally responsive services that are equitable and apply anti-oppressive approaches. Service providers explained that “connecting [youth] to culturally relevant services” (P6) which recognize intersectional identities, ethnoracial-religious values, as well as the experiences of systemic racism and discrimination, creates safer spaces to discuss cannabis use. They discussed the need for anti-racist and culturally responsive services not only in healthcare but also in other sectors such as school and legal systems. One service provider explained, “racialized young people, Black and Indigenous, specifically, I have found that they are not treated with the same compassion as their counterparts by the school system and by the criminal justice system” (P5). Service providers discussed hearing about inappropriate comments made by hospital staff when a youth using substances (including cannabis) presents at the emergency, and they recommended having “[cultural] sensitivity training with emerg staff, particularly” (P4). Service providers also underlined the importance of ensuring that This study makes an important contribution to the sparse literature on service provider perceptions of youth cannabis use in Canada and provides insights about their practice, as well as recommendations to improve policies, practice, and education. Our findings drew from quantitative and qualitative survey data, as well as qualitative focus group data. A mixed method design was an appropriate method that illuminated complementary findings across the quantitative and qualitative data. Data from both the survey and the focus groups showed gaps in service provider knowledge and skills that impact many aspects related to practice, including assessment and intervention. Some of the responses from service providers showed uncertainty or inconsistency between perceptions and practices. Many service providers reported that cannabis use can negatively impact youth mental health, but they also underlined that it is difficult to address this when many of the youth they serve are using cannabis to cope with mental health symptoms. Most service providers believe that they have a role to screen or assess cannabis use among youth clients, but less than half screen or assess regularly in their practice. Furthermore, few service providers use standardized instruments, many wait for youth to initiate the discussion on cannabis use, many do not believe that cannabis use is a primary focus of treatment, and many refer youth with cannabis use concerns to specialized services. Similarly, most service providers recognize the important role of families in youth treatment, but most do not work with families.These results highlight gaps in knowledge, skills, and confidence of service providers related to youth cannabis use, and substance use studies have shown that one of the primary reasons for these gaps is inadequate training and education , 61, 62.Most service providers reported not having a strong understanding of cannabis for medical purposes. Some referred to cannabis as natural and less harmful than other substances, while other service providers found it challenging to respond to statements made by youth that it is natural and medicinal. Since 2001, Canadians have had access to cannabis for medical purposes . In 2016It is important to note that 69% of the service providers in this study were social workers, which is not surprising when we consider that this profession is one of the most prevalent regulated professional groups in Ontario that focuses on mental health. In Ontario, there are approximately 23,757 social workers , 4,373 pIn addition to the need for increased service provider training, our study showed the urgent need for public education on cannabis use, which is a clear message by the CCSA highlighting the importance of “education and awareness” for “informed choices”.[42 p5] The gaps in public education, despite the high rates of cannabis use in youth, may explain some service providers’ disagreement or ambivalence about legalization. Many service providers underlined that legalization of recreational cannabis came into effect with inadequate public education, inadequate training for service providers, and inadequate access to addiction services to protect children, youth, and young adults. Most service providers were unfamiliar with lower-risk cannabis use guidelines and that there are lower risk guidelines that have been developed for youth . While mAnother important finding from our study relates to stigma and normalization. Less than half of the service providers believe that youth using cannabis are stigmatized, but 38% expressed that there is no stigma and attribute this to the normalization of youth cannabis use. They also noted that the normalization of youth cannabis use has made it difficult to express concerns about the adverse effects of cannabis use for this age group. Stigma is defined as negative stereotypes, assumptions, or attitudes toward individuals or groups . LegalizThere was consensus among service providers in this study that youth from equity deserving groups are more stigmatized when they use cannabis and other substances. A conceptual paper on substance use stigma underlines the importance of an intersectional analysis that focuses on “social identities, systems and structures that interact to produce privilege and oppression”.83 p89] A review by Public Health Ontario (2022)  found th p89 A reacceptability of services, which refers to the extent to which services are culturally responsive and meet the diverse needs of youth and families. Culturally responsive services require organizational practices, treatment modifications, and treatment access that focus on (1) cultural values in a setting and treatment, (2) demonstration of cultural humility, as well as anti-racism and anti-oppressive interventions, (3) culturally adapted evidence-informed interventions, and (4) innovative strategies aligned with cultural values [Service providers in our study described the need to reduce barriers to mental health and addiction services and increase equitable access to quality care for youth and their families. Access to mental health and addiction services is a longstanding issue that has been amplified in Ontario during the pandemic due to lockdown measures that closed or restricted the delivery of services , 95. A rl values . Studiesl values , 98. Intl values , 100. Inl values .This study has some limitations including the fact that its findings may not be generalizable across the country as the study was conducted in Ontario and policies, services, and education vary across the provinces. While the study included eight different professions, there was an overrepresentation of social workers, and the findings may not be generalizable to other mental health professions. One of the strengths of the study was the used of mixed methods, which provided breadth and depth on service providers’ perspectives. Another strength was the diversity of service providers in terms of profession, years of experience, gender, age, race, religion, and region of Ontario.This study highlights service providers’ perceptions, practices, and recommendations related to youth cannabis use with important policy, education, and service implications. Youth cannabis use in Canada is a public health concern that needs to be addressed through increased public education on risks and harms. Service providers need increased education and training to enhance their knowledge, skills, and confidence in addressing cannabis use. There is a pressing need for expanded education for youth and parents, improved access to mental health and addiction services, and the development of more family-centred and culturally responsive services. The legalization of cannabis was intended to protect youth and reduce their access to it. However, this objective has not been fully achieved, emphasizing the critical need for a public health approach to reduce prevalence rates of cannabis use among youth and mitigate associated harms.