Immunoglobulin M monoclonal gammopathy of undetermined significance (MGUS) comprises 15-20% of all cases of MGUS. IgM MGUS is distinct from other forms of MGUS in that the typical primary progression events include Waldenstrom macroglobulinaemia and light chain amyloidosis. Owing to its large pentameric structure, IgM molecules have high intrinsic viscosity and precipitate more readily than other immunoglobulin subtypes. They are also more commonly associated with autoimmune phenomena, resulting in unique clinical manifestations. Organ damage attributable to the paraprotein, not fulfilling criteria for a lymphoid or plasma cell malignancy has recently been termed monoclonal gammopathy of clinical significance (MGCS) and encompasses an important family of disorders for which diagnostic and treatment algorithms are evolving. IgM related MGCS include unique entities such as cold haemagglutinin disease, IgM related neuropathies, renal manifestations and Schnitzler’s syndrome. The diagnostic approach to, and management of these disorders differs significantly from other categories of MGCS. We describe a practical approach to the evaluation of these patients and our approach to their treatment. We will also elaborate on the key unmet needs in IgM MGCS and highlight potential areas for future research. Monoclonal gammopathy of unknown significance (MGUS) is defined by a <10% plasma cell (or lymphoplasmacytic cell) bone marrow (BM) infiltrate with paraproteinaemia quantified at less than 30g/l . IgM MGUIt is recognised however, that not all patients with MGUS are asymptomatic. A subset suffer organ damage due to the paraprotein despite not fulfilling criteria for a haematologic malignancy . These eWhile any subtype of MGUS can drive an MGCS, IgM paraproteins cause unique clinical syndromes which can be challenging to diagnose and treat. IgM MGCS are notable for the high prevalence of immunologic phenomena which we discuss in detail below , 9. The A 70-year-old gentleman presented with unsteady gait and examination revealed a sensory ataxia and complex ophthalmoplegia. A magnetic resonance imaging (MRI) scan of the brain and spine showed no mass lesion and cerebrospinal fluid studies were unremarkable. A nerve conduction study showed a demyelinating peripheral neuropathy. A full blood count showed no cytopaenias although a peripheral blood smear revealed cold agglutination of the red cells. Serum immunofixation demonstrated an IgM kappa paraprotein quantified at 10g/l.A whole body computed tomography (CT) scan showed no lymphadenopathy and a BM aspirate and biopsy demonstrated a lymphoplasmacytic infiltrate comprising approximately 5% of marrow nucleated cells. The MYD88 L265P mutation was not detected by allele specific PCR. There was no evidence of anti-myelin associated glycoprotein (MAG) antibodies, while anti ganglioside antibodies (GD1b subtype) were detected. A diagnosis of CANOMAD  syndrome was made based on these findings. The patient was treated with rituximab 375mg/m2 weekly for four weeks and made a partial neurological recovery despite normalisation of the serum IgM level and immunofixation becoming negative.Paraproteinaemic neuropathy in the absence of an active B-cell or plasma cell malignancy is well described and has been established as an MGCS entity , 10. TheAnti MAG neuropathy is the best characterized among IgM associated neuropathies and is more commonly associated with IgM MGUS than WM . The titAs illustrated by the case study above, neurological manifestations of IgM paraproteins can go beyond peripheral neuropathy. The CANOMAD syndrome is a rare example of neurological IgM MGCS characterized not only by chronic sensory ataxia but also ophthalmoplegia and cold agglutinins . Not allvia type I cryoglobulinaemia, manifesting in approximately 20-40% of patients  syndrome and cryoglobulin related neuropathies. The treatment for these conditions differs significantly from that for Anti MAG neuropathy, DADS-M and CANOMAD/CANDA . It is aThe optimal management for neurological IgM MGCS remains controversial due to its rarity and lack of prospective clinical trials in this field . IntraveRituximab is one of the best studied therapies for IgM neuropathies and reduces the circulating paraprotein by targeting the B-cell clone , 20, 21.Although plasmapheresis is a recognised treatment modality for hyper viscosity associated with WM , its rolA 60-year-old gentleman was referred to the dermatology clinic with persistent urticarial rashes on the trunk and extremities. The rashes had been occurring intermittently for over 3 years and had more recently been accompanied by fevers. Physical examination revealed an urticarial rash but no lymphadenopathy or hepatosplenomegaly. His full blood count was normal while serum immunofixation detected a monoclonal IgM kappa paraprotein quantified at 5g/l. BM studies showed a lymphoplasmacytic infiltrate comprising 3% of nucleated cells while a computed tomography (CT) scan of the whole body showed no organomegaly.A skin biopsy showed a neutrophilic urticarial dermatosis characteristic of Schnitzler syndrome. As his symptoms were mild, a watch and wait strategy was initially employed. However, his skin symptoms progressed over the next year although his IgM level remained stable. He was treated with a course of anti-interleukin 1 therapy (canakinumab) with a good clinical response.A variety of cutaneous eruptions may be associated with paraproteinaemias, ranging from relatively benign conditions such as xanthoderma, to more destructive lesions like pyoderma gangrenosum , 27. ParMacroglobulinosis and Schnitzler syndrome are the dermatoses specifically associated with IgM paraproteins , 29, 30.Cutaneous manifestations are also a common feature of cryoglobulinaemia and may occur due to a small vessel vasculitis and vascular occlusion by the cryoglobulin . These aAs with other subtypes of MGCS, the optimal treatment for cutaneous MGCS remains uncertain. A conservative approach is appropriate if the skin manifestations are not causing significant symptoms . With reThese data underscore the need for a better appreciation of the pathophysiology of IgM associated skin lesions. This will be essential for the development of more effective targeted therapeutics these disorders.A 50-year-old lady presented with nephrotic range proteinuria and oedema. Her serum creatinine was raised at 150 μmol/l while her full blood count and calcium were normal. Serum immunofixation demonstrated an IgM kappa paraprotein quantified at 4g/l. A BM aspirate and trephine biopsy showed 5% clonal lymphoplasmacytic cells and a CT scan showed no lymphadenopathy or organomegaly. A renal biopsy showed proliferative glomerulonephritis with monoclonal IgM deposits. She was treated with rituximab monotherapy resulting in normalisation of her serum IgM . Her renal function improved and stabilised over the next 6 months.In patients with a paraprotein and renal impairment, the challenge is to determine whether the renal injury can be attributed to the paraprotein or to other medical conditions. As renal impairment is a defining feature of MM and can occur in other monoclonal gammopathies, it is imperative to first exclude a plasma cell or B-cell lymphoproliferative disorder (LPD) , 36. MGRThe diagnosis of MGRS requires significant expertise and electron microscopy is recommended in the diagnostic process . As diagAlthough it is accepted that the treatment for MGRS should be clone directed, there is a paucity of prospective trials to inform the optimal choice of therapy , 37. WhiA 75-year-old gentleman was referred for haematology consultation when he presented with symptomatic anaemia and acral cyanosis. Physical examination was unremarkable. His full blood count showed a haemoglobin of 8g/dl with peripheral blood findings of agglutination resolving on warming to 37° C. The direct Coomb’s test was positive for the complement factor C3b while being negative for IgG. Lactate dehydrogenase, reticulocyte count and unconjugated bilirubin were elevated. His cold agglutinin titre was 70 and the thermal amplitude was 29° C. Serum immunofixation revealed an IgM kappa paraprotein quantified at 2g/l. BM studies showed increased erythropoiesis with a lymphoplasmacytic infiltrate comprising 5% of nucleated cells. He was treated with single agent rituximab 375mg/m2 weekly for 4 weeks and achieved a normalisation of his haemoglobin as well as haemolytic indices.via complement activation (Primary cold agglutinin disease (CAD) is characterized by an IgM antibody binding to the red blood cell membrane and is associated with a clonal lymphoplasmacytic infiltrate in the bone marrow –41. The tivation , 42. Pattivation , 42, 43.For those with active haemolysis, rituximab has traditionally been the first line treatment and results in response rates of close to 50% as monotherapy  44). Th. Th44). Cold temperatures can also result in cryoglobulinaemia among some patients with IgM paraproteins . CryogloAcquired Von Willebrand disease (AVWD) has been described as a rare immune-haematologic manifestation of IgM gammopathies . Among tImmune thrombocytopaenic purpura (ITP) is another rare immunohaematologic phenomenon reported with IgM paraproteins , 53. TheA 50-year-old gentleman was admitted for heart failure with a normal coronary angiogram. Echocardiographic and cardiac MRI features were suspicious for cardiac amyloidosis. Serum immunofixation showed an IgM kappa paraprotein quantified at 6 g/l and BM studies confirmed a lymphoplasmacytic infiltrate comprising 7% of nucleated cells. The MYD88 L265P was detected using allele specific PCR of CD19 selected BM cells and an abdominal fat pad aspiration provided histologic confirmation of light chain amyloidosis. Mass spectrometry was used to confirm that the amyloid was of the light chain sub-type. A CT scan showed no lymphadenopathy, and his full blood count and renal function were normal. The patient was treated with six cycles of bendamustine-rituximab and achieved a complete haematologic response, unfortunately a cardiac response has not been achieved as of present.While the previous sections focused on organ specific disorders driven by small IgM secreting clones, it is essential that multi system syndromes are not overlooked in this context. ALA is a potentially life-threatening condition which is more commonly associated with non IgM paraproteins . ALA assWhile biopsy of the involved organ is a consideration, this carries risk and bleeding complications are reported more frequently in patients with renal amyloidosis undergoing biopsy . AbdominIgM paraproteins are also rarely described to drive POEMS syndrome . InteresThe management of IgM ALA and POEMS are areas of great uncertainty, as the bulk of evidence for these diseases come from trials of patients with non-IgM ALA driven by plasma cell clones. Given the rarity of these disorders, we currently rely on case reports and case series describing rituximab based chemo-immunotherapy which results in haematologic responses but not always an organ response .Distinguishing IgM MGCS from WM is important and can be achieved based on the presence of symptoms attributable to the IgM clone and establishing the diagnosis of WM as defined by the world health organisation 2016 classification . While pIgM MGCS entities are rare and many of these disorders have non-specific symptoms which could be attributed to concomitant medical disorders. Having a high index of suspicion and considering the diagnosis of IgM MGCS is therefore a crucial first step in the evaluation process. The importance of interdisciplinary collaboration cannot be emphasized enough in the diagnosis of MGCS. As illustrated by the cases above, haematologists would need to collaborate with neurologists, dermatologists, nephrologists and pathologists among others in the process of making a diagnosis. Especially for the complex multisystem disorders, a multidisciplinary approach is also required when it comes to management decision making.MYD88 L265P mutations are less frequent in IgM MGUS (approximately 60% of cases) than they are in WM  features is also a vital aspect of the diagnostic process. re in WM . The frere in WM , 43. TheWe are only beginning to learn about the clinical manifestations of small IgM secreting clones and the resulting MGCS syndromes. We propose that multidisciplinary diagnostic and therapeutic approaches will be essential in tackling these diseases while clinical and translational research must focus on unravelling their biology and therapeutic susceptibilities. The treatment for IgM MGCS should be stratified based on the organ (s) involved, symptoms and patient fitness. While rituximab-based therapies have been established for certain subtypes of MGCS, the management for many remain uncertain. Bruton tyrosine kinase (BTK) inhibition is currently a standard treatment modality for WM, however there is limited data supporting BTK inhibitors in IgM MGCS , 68. TheHexameric IgM has been proposed to be more immunogenic than the pentameric form, however its role in IgM gammopathies remains uncertain , 72. TheSdM and L-PG conceptualised the study. L-PG and SdM wrote the first draft of the manuscript. WJC, MO, and CYS provided critical editing and input for the manuscript. All authors contributed to the article and approved the submitted version.The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.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.


Falls and resulting injury are a significant concern for individuals living with multiple sclerosis (MS) that use a wheelchair and/or scooter to support mobility. Effective fall prevention efforts are vital to support the health, wellbeing, and participation for these individuals.This study reports the findings from the process evaluation conducted in association with a pilot study evaluating the efficacy of Individualized Reduction of FaLLs-Online (iROLL-O), an online, group fall prevention, and management program specifically designed for community-based people living with multiple sclerosis (pwMS) who are full-time wheelchair or scooter users.A mixed-methods process evaluation was conducted, with specific attention to the impact of online delivery on intervention implementation, participant satisfaction, and mechanisms of change (MOC). Multiple data sources were utilized, including post-session and post-intervention participant and trainer feedback forms and participant qualitative interview data. Descriptive analysis was conducted using Microsoft Excel. Close-ended questions were analyzed by examining five-point Likert scale responses. Qualitative interview data was explored using thematic analysis.Post-course Trainer Feedback Forms indicate trainer satisfaction with the group dynamic, ability to address unique group needs, and program content. Reach improved with online delivery as transportation barriers were removed and recruitment from a broader geographic area was enabled. Three themes reflecting key MOC emerged from the analysis: group context, motivation for participant engagement, and the multifaceted nature of the program. The COVID-19 pandemic was identified as a contextual factor impacting community participation. Both participants and trainers identified the group dynamic as a strength. The trainers valued the program's flexibility in allowing them to address individual and/or group-specific fall prevention needs.Twelve participants and three trainers  contributed to the study. Online delivery did not compromise session fidelity, which averaged 95%. No significant adaptations to the intervention were made during delivery. Participant satisfaction was high at 4.6/5.0. Feedback from key stakeholders was essential to a meaningful process evaluation. Online delivery supported program implementation, including reach, and resulted in high levels of satisfaction among participants and trainers. Future iterations should aim to uphold the positive group context, recruit, and train skilled interventionists who are licensed as occupational or physical therapists and continue to provide the program's diverse approach to fall prevention and management. Fall prevention is a recognized public health priority and falls pose a significant threat to the health and wellbeing of people living with multiple sclerosis (pwMS). Emerging evidence points to the high prevalence of falls and fear of falling among the 250,000 pwMS who use wheelchairs and scooters as their primary means of mobility and highlights the unique fall prevention needs of this population . Among wIn recent years important advances in evidence-based fall prevention and management programs designed for pwMS who use wheelchairs and scooters as their primary form of mobility have been made. Specifically, a single session, 45-min intervention created by Rice et al.  resultedIndividualized Reduction of FaLLs (iROLL) program content is evidence-based . SpecifiSkills built through the intervention range from developing transfer and wheelchair/scooter skills, building postural control and developing exercise habits to managing environmental hazards, completing wheelchair maintenance checks, and developing post-fall recovery plans . Particip = 0.01), knowledge of fall management strategies (p = 0.01), community participation in activities important to the participant (p ≤ 0.01), and transfer quality (p = 0.002). No significant differences were seen related to fall frequency, quality of life, seated postural control, or wheelchair skills . Individualized Reduction of FaLLs-Online mirrors iROLL-IP in content, processes, and outcomes sought. Highlighted changes include adding asynchronous learning activities, trainer discussion guides, and the use of synchronous group videoconferencing. Like iROLL-IP, iROLL-O is a complex, group-based intervention with multiple potentially active elements that support change and/or impact key study outcomes.This study reports the findings from the process evaluation , 18 condIn April 2020, iROLL-IP was translated to iROLL-O. Individualized Reduction of FaLLs-Online offered the same content as iROLL-IP and was created with the same desired outcomes in mind. Any adaptations made to translate iROLL-IP for online delivery were made with the intent of keeping key MOC identified through the iROLL-IP process evaluation intact. Specifically, the team sought to preserve the group dynamic, comprehensive nature of the program, strong program development, role of a skilled interventionist, and motivated participants . The logA series of adaptations were made to allow for remote delivery of the intervention. To begin, participants were required to have access to the Internet. The most substantial change was an increase in the use of asynchronous content. Specifically, in addition to the homework activities that were included in iROLL-IP  each week of iROLL-O, participants were asked to watch brief, pre-recorded videos in advance to the synchronous group time. During iROLL-IP, the trainers provided the program to study participants in six weekly, 2-h long, in-person, synchronous sessions. Between the weekly group sessions, participants were asked to set goals, write journal entries, and practice skills learned during the session. For iROLL-O, the weekly content was delivered online using asynchronous and synchronous learning strategies. A table describing key synchronous and asynchronous activities in each iROLL-O session is provided in Significant changes were also made to the trainer responsibilities and materials due to the reduced synchronous time. During iROLL-IP, the trainers presented didactic lectures, led discussions related to program material, and provided supervision as iROLL-IP participants practiced exercise, transfers, and wheelchair skills. During iROLL-O, the didactic content was presented during the asynchronous portion of the program. As a result, the trainers focused primarily on fostering discussion during the synchronous sessions. A detailed discussion guide was developed for the trainers to assure consistent discussion across each implementation of the program. Additional practice opportunities were offered. Participants were given the option of sending a video recording of a transfer and/or wheelchair/scooter skills and obtaining trainer feedback. Like the iROLL-IP training , the supAs described by Rice et al. , the NorAll iROLL-O trainers were recruited by invitation only. All had experience delivering at least one cycle of iROLL-IP, were licensed as an occupational or physical therapist, had at least 2 years of clinical experience including at least 1 year of experience providing care to individuals with neurological impairments utilizing wheeled mobility devices, and had experience providing education to patients/clients in a group setting. As iROLL-IP trainers, iROLL-O trainers had previously participated in an iROLL-IP training workshop, which featured a thorough review of the facilitators' and participants' manuals. Strategies to maintain fidelity associated with both program content and delivery was described in detail. Individualized Reduction of FaLLs-In Person trainers also participated in ongoing meetings with the principal investigator to ensure questions were answered during the implementation of the intervention . IndividParticipants prospectively tracked fall frequency using a fall diary 12 weeks before and 24 weeks after the intervention. Outcomes were assessed pre, immediately post and 12-weeks post intervention regarding fear of falling, knowledge of fall prevention, mobility skills, quality of life, and community participation. Once assigned to a group and prior to each synchronous iROLL-O session, participants were asked to independently watch pre-recorded videos in specific content areas related to fall prevention and management. In addition to viewing asynchronous videos, iROLL-O participants were asked to complete an exercise program, goal setting, journaling, and action planning activities between sessions as homework. During the consent process the participants were informed that they were required to have assistance when engaging in any of the physical skills. In addition, during the synchronous sessions, the trainers reminded iROLL-O participants to practice physical skills with the help of another person. Trainers invited participants to report upon homework activities during synchronous group session. During the synchronous session, trainers facilitated discussions, highlighted key content-related messages for the week, and reviewed the exercise program. Participants were instructed to attend all six synchronous group sessions. Information describing key synchronous and asynchronous activities for each iROLL-O session is provided in Participant Post-Session Evaluation after each iROLL-O synchronous session and a Participant Final Course Evaluation Form immediately following the sixth and final synchronous iROLL-O session. The forms included a mix of Likert scale satisfaction questions and open-ended feedback to ascertain perspectives on the program. Individualized Reduction of FaLLs-Online participants were also invited to participate in a one-on-one interview (audio only) led by a trained research assistant. Participant interviews were recorded and transcribed for data analysis purposes.Each iROLL-O participant was asked to complete a Trainer Fidelity Form after each iROLL-O synchronous session, and a Post-Course Trainer Feedback Form at the end of each course. These forms included a mix of Likert scale questions, Yes/No completion responses to specific fidelity items, and open-ended feedback on program strengths, limitations, and improvement opportunities.Each trainer was asked to complete a Data collection strategies are delineated in Trainer Fidelity Form to assess fidelity at the end of each synchronous session. At the end of the course, Trainers completed the Post-Course Trainer Feedback Form to assess perceptions of implementation strengths and weaknesses. Synchronous dosage was determined by calculating the duration of each iROLL session based on start and end times documented by trainers on Trainer Fidelity Forms. Asynchronous dosage, including practice activity completion was not tracked for this study. Adaptations were identified via documentation and communication  with the PI (LR) of the study. Reach was tracked by a research staff member, who monitored interest calls, eligibility, and attendance . The staff member also monitored attrition of study participants by completing telephone calls with those missing sessions and maintaining findings on an internal tracking log.Trainers completed a Participant Post-Session Evaluations following each session. Trainers used the Trainer Fidelity Form after each session and the Post-Course Trainer Feedback Forms at the end of each course to rate their perspective on program features and satisfaction. Data was collected confidentially via REDcap and participants were e-mailed a link from the study coordinator to complete the assessments independently online. The trainers were not involved in the data collection process of the feedback forms.Participant satisfaction data was collected using the Participant Post-Session Evaluations, Post-course Participant Interview Transcripts, Participant Final Course Evaluations, and the Post-Course Trainer Feedback Forms.To examine MOC, relevant data were extracted from the Descriptive analysis was conducted using Microsoft Excel . As with iROLL-IP process evaluation , close-eParticipant Post-Session Evaluations, Participant Final Course Evaluations, and the Post-Course Trainer Feedback Forms.Using triangulation to support internal validity of findings, a member of the investigative team (TV) compared the findings that emerged from the transcripts of the telephone interviews conducted with iROLL-IP participants, to the The study was approved by the Human Research Protection Offices at the three collaborating sites: the University of Illinois at Chicago (UIC), the University of Illinois Urbana-Champaign (UIUC), and the Shepherd Center (SC) in Atlanta, GA. All study participants provided informed consent prior to engaging in any research activities.Results from three trainers and all available process evaluation data are presented herein, including participants who dropped out of the program at various points. Seven cycles of iROLL-O were delivered between June 2020 and May 2021. Trainers ran between one and four iROLL-O groups. When assigned a group, a trainer conducted each of the six sessions. Process evaluation data was collected between June 2020 and May 2021.Key characteristics of the 12 iROLL-O participants that completed follow up testing after the intervention can be found in Fidelity findings indicated that the intervention was delivered with 94.9% fidelity, on average. The lowest fidelity score was associated with Session 6 (89.3%) and the highest fidelity score was associated with Session 3 (97.4%). The items on the fidelity forms that primarily related to logistics  were scored the lowest by trainers. Content-related items  were rated high by trainers, with the exception of one item ranked slightly lower than the others .dose findings, each iROLL-O session was designed to have 60 min of synchronous session activities. Session 3 was rated the longest, averaging 78 min and Session 5 was the shortest at 58 min. The average synchronous time for iROLL-O was 65 min, per reports from session trainers. No significant adaptations were made during the course of the intervention.Regarding Reach findings indicated 18 individuals were deemed eligible and planned to participate in iROLL-O. Three withdrew prior to the intervention: one individual was deemed ineligible, one was lost to follow up, and another reported the intervention did not fit their needs. Three additional individuals dropped out after their iROLL-O cycle began: one was hospitalized, one reported an injured spouse who required care, and a third was lost to follow-up. Twelve individuals completed the program. The number of iROLL-O participants in each group ranged from two to three individuals. Many participants appreciated the accessibility of the online program. In fact, participation in a face-to-face program clearly would not have been an option for some iROLL-O participants.if it was in person I don't know that I could have participated because I don't know that I would have been able to get there .…Well, I think it was probably a little more adaptable, you can do a little at a time and turn it off if you wanted to and go back to it. I kinda like that idea rather than having to spend 2 h at a time. Maybe, it was easier the way we did it .Despite the benefits of online delivery of the program, there were also some drawbacks. Notable challenges included technical problems and limitations with transfer practice as a result of being virtual.Personally, I was not able to join in on the meeting because the computer took so long to power up and I was late .One seemed to have signed in and then walked away—never responded to questions and we only saw her ceiling (Trainer Feedback).…Although virtual sessions are great and have some benefit they do limit the ability to practice or provide a lot of practical feedback on how people are able to transfer (Trainer Feedback). it probably would have been better to learn in person. You know, instead of watching a video of someone getting up, actually being there and you know... showing me how to get up .…Participant Post-Session Evaluations was high (4.6/5.0). The highest satisfaction scores were associated with Session 5 (4.8/5.0) and the lowest scores were associated with Session 2 (4.5/5.0). Across all sessions, participants reported the highest satisfaction with the following program features: Week 4—Follow up home exercise training 4.9/5.0; Week 5—Follow up home exercise training 4.9/5.0; and Week 5—Knowledge of assistive technology to manage fall risk 4.8/5.0. Likewise, participants rated the following program features the lowest across all sessions: Week 4—Practice opportunities to refine wheelchair safety skills 4.3/5.0, Week 3—Training on complex transfers 4.3/5.0, and Week 2—Wheelchair/Scooter safety skills training 4.3/5.0. Participant satisfaction based on findings from data yielded by the Post-Course Trainer Feedback Forms, were: participants were given enough time to engage in and benefit from social learning; the program supported participants' ability to manage several types of fall risk factors; and the program improved knowledge and management of fall risk factors . The three lowest rated program features were: the program improved community participation 3.6/5.0; the program improved participants' ability to manage wheelchair skills and transfers 4.2/5.0; and the quality of the manual with respect to its usefulness in supporting one's ability to facilitate and deliver the iROLL intervention 4.2/5.0. The most essential program features as reported by trainers included: the videos, group discussion/context, transfer skills, and wheelchair skills and maintenance. The least essential program features included wheelchair or scooter higher-level skills , and community participation discussions.Program features rated the highest by trainers, as indicated by the completed Post-course Participant Interview Transcripts were the primary data source yielding insights into MOC, with data from the Post-Course Trainer Feedback Forms, Participant Post-Session Evaluations, and Participant Final Course Evaluations adding additional insights. Three major themes emerged: group context, motivation for participant engagement in iROLL-O, and the multifaceted nature of the program.The Participants highlighted the value of the group context, which allowed them to encourage each other and share problems, ideas, experiences, and information. The trainer was often mentioned as a positive influence on the group discussion.It's nice to have a small group of people that you'll get to know and will share your problems” .“In my group we share learned experiences, along with encouraging suggestions with each other. Our facilitator is great, she allows for open discussion without compromising the module info for the week” .“The participants described their intrinsic motivation to participate in iROLL-O. Participants' reasons for joining the iROLL-O program ranged from recognizing a history of falls and a desire to learn skills to prevent or manage falls to contributing to research, receiving financial compensation, and accessing social support:I have lots of falls in my history because no one actually gave me a license to use this [wheelchair], you know… I just made a terrible mess and no one gave me a license so that explains it .I wanted to learn how not to fall and different ways to use my wheelchair because I was never taught and I was just subscribed hey I think you need to be in a wheelchair since I didn't go to any therapy or anything. You know I didn't learn how to get up from a fall or what to do when you go over a bump or anything like that so I was really interested in what the program could offer .Trainers and participants alike spoke to the benefit of the wide range of topics covered in iROLL-O and the diverse learning approaches used. The intervention's ability to support both current and future fall prevention needs and its attention to fall management was specifically highlighted, as was the value of the content on fear of falling, fall management, self-management, self-awareness, environment-related safety considerations, and transfer training. Both trainers and participants described the usefulness of the resource materials, exercise, and the videos. I have become more aware, like if you're rushing … I can't be rushing .… I know that when I have to transfer from the wheelchair to a chair or from the wheelchair to the toilet or to the shower, I need to make sure that there's really a clear access path... the program was great and made me aware and made me start doing it .…I think it was a lot of help cause it gave me different views of doing different transfers and well it did as we said it opened my eyes to how I could be my own worst enemy when it comes to falls. Well I was just like going through life thinking that I can do this no problem and being sorta nonchalant about things and falling .This course was very informative. I feel like my core has gotten stronger from exercises. Transfers are still pretty difficult for me being in a scooter so this course has taught me that I need to investigate getting a power chair… .And It was helpful in a lot of ways and it gave me and idea of what to prepare myself for in the future because I am probably headed toward not being able to use a scooter anymore or having to put a lift in my van and stuff like that, where I haven't had to do that yet so far .Post-course Participant Interview Transcripts, Participant Post-Session Evaluations, Participant Final Course Evaluations, and the Post-Course Trainer Feedback Forms provided important insights into the influence of COVID-19 on the participants' experience of the intervention. Individualized Reduction of FaLLs participants described the negative impact of the pandemic on their activity levels:The present study occurred during COVID-19 pandemic. Data from the I haven't been doing anything .…Because I really missed being able to go to a gym and do any workout, so this helps me .COVID-19 has put a halt to any attempts to get engaged in community activities .Likewise, trainers identified the pandemic as the probable reason that conversations about community participation and engagement were so challenging:It was difficult to engage participants in discussion of community participation. Not sure if is due to COVID-19 restrictions or lack of participation in other parts of the program (Trainer Feedback).Participants did not have much to say about community engagement as they are not really accessing the community due to COVID. It made this topic of discussion somewhat difficult and irrelevant (Trainer Feedback).I am a ‘victim' of snow and ice which makes me homebound” and another, “…Every time I have a plan [to buy new DME] the weather changes so I don't want to go out and experience the life of falling on the snow or ice…” .Winter weather was another contextual factor that negatively impacted participation in activities outside of the house. Participants who engaged in iROLL-O during the winter months clearly curtailed activity due to dangers posed by snow and ice. One participant stated, “the suggestion is to find a PT or OT that can show how to do the technique being demonstrated. I do not live in an area with those services easily accessed…” .The final contextual factor identified was living in areas where access to physical or occupational therapy was limited, which negatively impacted participants' ability to pursue recommended services upon the conclusion of iROLL-O. One participant stated, “…Trainer Fidelity Forms highlighted many program strengths/facilitators and challenges/barriers . Trainers also requested a hard copy of the participant manual.Participants and trainers also highlighted specific areas for program improvements. For example, one participant stated, “Some participants found the selected images, models, information, and transfer samples unrelatable to their experience.I think the real challenge, besides the type of wheelchair that I had that some of the things I wasn't able to do, also seeing like the demonstrations, they weren't necessarily for me. It was like maybe if they had someone that had more difficulty being able to get up. Maybe having someone with my type of MS instead of just saying “hey just put your leg up here” and doing it like its nothing because its not nothing .Well, maybe I would say that the only part that I didn't think was wonderful was the maintenance and the back and forth of how we were supposed to do such and such every month or every 6 months and back to something that was once a year and you know it was sort of erratic…” . Others had suggestions to improve the exercise portion of the program, such as simpler exercise naming, adding more leg exercises, and the potential of a separate, optional exercise meeting.Participants provided suggestions to specific aspects of the program, including improving the wheelchair maintenance and exercise portions of the program. One participant reported, “Finally, trainers and participants agreed on the need for more practice opportunities, especially to hone, wheelchair and transfer skills, as well as a preliminary session occurring before Session 1 to acquaint the group with the technology associated with the mode of delivery.I think the online version is great—it expands the program to many more people and decreases demands on transportation. But I think more can be done to incorporate “doing” into the sessions—planning to “do” a transfer during the session by creating a plan to have a caregiver present or planning to “do” w/c skills by signing in on your phone that day… (Trainer Feedback).The COVID-19 pandemic, combined with reach-related challenges identified in the process evaluation of iROLL-IP  created Findings demonstrated that online delivery resulted in high levels of satisfaction among participants and trainers. Participants were especially satisfied with the home exercise program and training on use of assistive technology to manage fall risk. Findings also demonstrated that online delivery supported program implementation, including program reach. It is evident that online delivery facilitated increased access to iROLL. In iROLL-IP, 32% of screened individuals declined to participate either due to transportation related issues or time/scheduling issues . Such baPositive group dynamics, the multifaceted nature of the program and the motivated participants were identified as key MOC supporting attainment of program outcomes. These MOC provided evidence that social learning theory and self-management strategies were effectively applied in iROLL-O. Trainers were notably satisfied with the group format, the social learning that occurred, and the program's ability to improve participants' self-management of diverse fall risk factors. Similar to the experience reported by Banbury et al. , effectiAs intended, the process evaluation led to identification of several opportunities to improve iROLL-O. Participants and trainers alike supported the revision of program material to increase relatability to more diverse functional levels and devices utilized. For example, more images portraying scooter users were recommended. Importantly, the need for more opportunities for participants to practice wheelchair skills and transfers was identified through several sources. The challenges associated with teaching wheelchair skills via telehealth are not unique to iROLL-O. In an intervention aimed at evaluating an mHealth wheelchair skills program for older adults using manual wheelchairs, Giesbrecht and Miller  reportedAdditional areas for improvement identified through the process evaluation pertain to addressing challenges associated with online delivery. Future iterations of iROLL-O can utilize an iterative process to onboard participants and trainers, and develop a protocol for technical support. An optional pre-intervention session was offered to support/check technology and orient participants to the program, but few chose to attend. Rather than making this pre-intervention session optional, an iROLL-O “Session Zero” designed to orient participants to the online platform and support services available can integrated into the iROLL-O program to mitigate technology-related issues noted by participants and trainers. Finally, while expansion of delivery of the iROLL program using the online form is warranted, professional state laws and regulations related to telehealth need to be considered, especially when delivering services across state lines .things that you couldn't participate before because you couldn't get out, now everything is being held online, like church and meetings, like my MS meetings they're all zoom now and they got a MS zoom dance class they can be done in a chair, so yeah so zoom has been awesome really. I really like that and I really liked that part of the study” . Overall, the process evaluation findings provide an important reminder that study results related to community participation must consider contextual influences on the outcome.Understanding the context in which iROLL-O was delivered goes beyond consideration of online delivery. The iROLL-O cycles took place between June 2020 and May 2021, a period when social distancing was heavily utilized to mitigate risk of infection. The pandemic had a significant psychological impact on pwMS, including a “higher burden of depressive symptoms, a worse sleep quality and perceived an increase in fatigue level” compared to the general population . The panTrainer Fidelity Form) must be avoided. In addition, although the study utilized feedback from both interventionists and end users, the numbers of people in both stakeholder groups were small. Feedback from larger samples of stakeholder groups would yield more robust data to inform evaluation design and intervention development. Future studies involving larger numbers of participants from a variety of geographic regions are needed to improve generalizability of the findings. Fidelity was also measured by trainer self-report. An external rater of fidelity would increase the validity of the session fidelity findings. Finally, given that findings suggested that participants' community participation, a long-term goal of the iROLL-O intervention, was negatively impacted by the COVID-19 pandemic, enhancing process evaluation strategies to better understand contextual influences on intervention participation and outcomes is warranted.There are several limitations associated with this study that require consideration. To enhance learning, trainers reviewed and highlighted key points of the asynchronous session content during the synchronous group sessions. However, asynchronous dosage received by the participants was not tracked. The research team cannot confirm if participants watched assigned videos, completed practice activities, and/or if quantity of participation in asynchronous activities had an impact on study outcomes. As emphasized by Lichstein et al. , deliverFeedback from key stakeholders was essential to an informative process evaluation. Online delivery supported program implementation, including reach, and resulted in high levels of satisfaction among participants and trainers. Individualized Reduction of FaLLs content and processes that apply social learning theory and application of self-management strategies were closely tied to MOC and were supported by online program delivery by skilled occupational and physical therapy interventionists. Future iterations should aim to uphold the positive group context, recruit, and train licensed occupational or physical therapists as interventionists, and continue to provide the program's diverse approach to fall prevention and management. Revisions to enhance participants' technical capabilities and relatability of program materials are indicated.The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.The studies involving human participants were reviewed and approved by the study was approved by the Human Research Protection Offices at the three collaborating sites: the University of Illinois Chicago (UIC), the University of Illinois Urbana-Champaign (UIUC), and the Shepherd Center (SC) in Atlanta, GA. The patients/participants provided their written informed consent to participate in this study.TV: conceptualization and design, data analysis and interpretation, methodology, manuscript drafting, and revision. EP and LR: conceptualization and design, data analysis and interpretation, methodology, manuscript drafting and revision, funding acquisition, and supervision. AM, RY, SS, JK, and AS: data analysis and interpretation, methodology, manuscript review, and revision. All authors contributed to the article and approved the submitted version.


It is estimated that about 50% of people in low- and middle- income countries who require rehabilitation do not get it. Multidisciplinary rehabilitation services led by Physical and Rehabilitation Medicine (PRM) physicians have been shown to improve functioning, independence and the quality of life of persons with reduced functioning or disability. However, there is a dearth of PRM physicians in low to middle income countries (LMICs), particularly in sub-Saharan Africa. One potential solution to this lack of specialists is the establishment of PRM training programs, which are currently lacking. The International Rehabilitation Forum (IRF) developed and implemented a fellowship program to train physicians in rehabilitation medicine and has been successful in Ghana, Ethiopia and Cameroon, all LMICs in sub-Saharan Africa. However, ongoing challenges include inadequate PRM trainers, availability of logistics and services for hands on experience, and funding. The fellowship program has a promising future and an ultimate goal of having locally trained fellows leading the program and expanding it to other LMICs. There has however been no publication of the process followed to achieve this or of a similar process undertaken anywhere in Africa. The process followed in this publication highlights the journey from engaging stakeholders to the admission of new and current fellows in training. There is an increasing unmet need for rehabilitation globally. The WHO estimates that about 50% of people do not receive the rehabilitation they require . This neOne strategy for addressing rehabilitation needs in high-income countries is for rehabilitation to be provided by a multidisciplinary team of rehabilitation professionals including occupational, physical, speech and language therapists, orthotists and prosthetists as well as rehabilitation nurses all led by a PRM physician. This approach to care has been shown to improve functioning, independence and the quality of life of persons with disabilities or reduced functioning . With thThe establishment of PRM training programs in sub-Saharan Africa plays a very important role in increasing the number of PRM physicians and thus improving access to care. However, PRM training programs are lacking in a huge part of sub-Saharan Africa. A study published by Haig et al in 2009 revealed that there were only six PRM physicians in the whole of sub-Sharan Africa and this did not include Ghana .The lack of PRM physicians meant that persons with reduced functioning missed out on comprehensive and coordinated rehabilitation in majority of sub-Saharan African countries where disability is stigmatized. This resulted in persons with disabilities being abandoned by family or ending up on the streets begging for alms to survive.This paper chronicles the development of PRM as an important and vital specialty in sub-Saharan Africa using Ghana as a case study. The paper highlights the successes and challenges to improving access to PRM care through the establishment of a training program while providing recommendations for building on this approach.In response to the shortage of PRM providers and lack of medical rehabilitative care in LMICs including those in sub-Saharan Africa, the International Rehabilitation Forum (IRF), a non-for-profit organization, was created in 2009 by American and international rehabilitation advocates. The purpose of IRF is to build relevant rehabilitation medicine practices in low-resource and isolated regions.The IRF utilized grass roots efforts and disruptive innovation as a means to challenge the status quo of rehabilitation in low resource settings. Examples of these efforts include identifying and mentoring rising leaders in LMICs, researching and publishing on disability policy, creating and distributing free videos on disability, and hosting “world congresses” in LMICs to foster local partnership . More reTo help address resource needs in sub-Saharan Africa, the IRF developed a plan to for a PRM fellowship training program utilizing international resources from high-income countries. In this case, the predominant resource utilized was teaching personnel for education. International educators dedicated their time to train interested physicians in sub-Saharan countries to become PRM experts and help construct sustainable programs. This model of international partnership between high-income and LMICs has been described by other medical specialties as well , 13.The development of a fellowship program was based on a decade of exploration and trials. First explorations revealed a shocking lack of PRM specialists, formalized in an article that found only six specialists in all of sub-Saharan Africa. This article, which exposed failures of health systems, governments, non-government organizations and the WHO; was published simultaneously by five international journals as a call for action , 14–17.To develop a strong and sustainable program it was important for the team to understand the socio-political environment, build more of a case for change, and get approval and support. To achieve this, African ex-patriates, including the Ghana Medical Rehabilitation Group, met monthly with IRF leaders, orienting them to culture, politics, and opportunities. There was initial fundraising to begin the program. African-born American-trained PRM specialists were identified and recruited as liaisons. Research publications co-written by African and American PRM physicians demonstrated the underrepresentation of disability in government epidemiological data , pointedThe program only moved forward when African physicians with a passion were made aware of the IRF. A team of physicians including an Ethiopian doctor as well as the then Ethiopian minster of health and now WHO secretary general visited the United States. During that visit they met with IRF leadership and encouraged development of an on-line fellowship with a promise to approve it through the ministry of health. In Ghana, a dedicated physician associated with the IRF identified PRM could be moved forward as a 2-year subspecialty if developed as a “Sports, Exercise and Rehabilitation Medicine” program. Both countries had a very stringent, but somewhat different criteria for specialty training and a program was designed to fit both systems.via distance learning yielded no results. The initial IRF fellowship program was loosely organized around the Accreditation Council for Graduate Medical Education (ACGME) core competencies and modeled after residency training programs in the United States, headquarters of the IRF. The curriculum included components of the International Society of Physical and Rehabilitation Medicine's (ISPRM) core curriculum and competencies published in 2019  ProThe curriculum content for year one focused on covering core subjects with year two taking a deeper dive into each subject with more focus on case-based learning and fellows own case discussions .via internet) weekly didactic sessions with experts reviewing core content from the lectures and facilitating discussions of application to practice occurred. Homework assignments to reinforce learning concepts or to promote exposure to rehab mindset conceptualizations were made. Additionally, an on-line discussion forum was established to bring cases and questions to both fellow learners and content experts and to share clinical scenarios. A bank of core articles and assessment scales was also made accessible via the internet for all learners. Pre and post-tests were performed to assess acquisition of new knowledge. The in country sponsoring institutions were ultimately responsible for clinical experiences for the learners, but specific recommendations were made by leadership for experiences the fellows should seek out such as joint injections or exposure to EMGs. In the last 6 months of training, fellows completed their dissertation research and graduated or sat for their board exams depending on their medical college's guidelines.Once a core subject matter and principles outline was developed, the training team recruited content experts for each subject globally. The methodology for teaching included a multimedia approach. Content expert power point and video-based lectures were pre-recorded and accessible online to allow flexible access to learning modules. The online formats were standardized to a universally downloadable and viewable format to accommodate operability on multiple device platforms with consideration of potential connectivity issues. One hour live  and cohort two including three fellows, all from Ghana. The political process involved in the establishment of a PRM fellowship in other African countries has been challenging. Cameroon has yet to formalize the training, and as such their fellow will receive an IRF diploma without board certification of the specialty of PRM. South African colleagues intend to join the next cohort of trainees despite no formal structure under the MOH and will work to gain government recognition only after a number of graduates can advocate for their careers.As a requirement of developing the educational program it was requested that host hospitals commit their trainees' time, have allied health and specialist physician buy-in, and establish a small inpatient rehabilitation unit. Despite promising initial conversations neither of the SSA host hospitals have made gains in establishing space for inpatient rehabilitation at this time. The opportunity to create rehabilitation wards is immediate with post operative and neurologically injured patients having long stays and future rehabilitation units providing a value-added service freeing surgical specialists and internal medicine beds and time to focus on acute needs. Without inpatient rehabilitation wards for hands on patient care experiences it is difficult to adequately train the fellows and development of functioning rehabilitation teams will be a daunting task as the fellows work to establish PRM as a specialty in their country. Once there is a core PRM trained group of providers, nurses and therapists trained in rehabilitation concepts and techniques will be necessary to appropriately treat injured and disabled patients for optimal outcomes.Fellows have taken on the mantle of academic and political leadership in African rehabilitation. As a group they have published a number of papers on rehabilitation in Africa , 25, 26.Challenges have been faced in the program running and development, with a primary obstacle being lack of adequate in country expertise in PRM and as such awareness of the field. One goal of the program is for graduates to not only practice PRM, but to also become the mentors and clinical teachers for future fellows. Until that occurs, training will continue to be led by those practicing outside the host countries.Although an initial hope was for the program to largely be taught in country by African orthopedic surgeons, neurologists, and physiotherapists, none of these specialists had ever interacted with a doctor specializing in functioning (PRM) so the current distant-led program was chosen. Bridging this medical cultural gap is a major focus of the first 8 weeks of the fellowship. Questions of “how does a PRM consultation add to good care by a neurologist or orthopedic surgeon?” are answered with basic competency training in bowel, bladder, swallowing, nutrition, skin, and mental health. Introductions to how a PRM team functions including introduction to allied health professions, some of whom do not exist in many SSA countries is provided as is the multidisciplinary team approach to care which is a basis of PRM. Training fellows in the basic science of exercise, functioning, and outcomes is paramount to the rehabilitation mindset and without this orientation fellows risk returning to a “diagnose-treat-cure” process rather than also including functioning and quality of life in their treatment plan.Because many allied health specialties are not universally present in SSA and others training may vary widely, education regarding the potential of these roles at times was theoretical. Providing an introduction to what different specialties, such as speech therapy, may contribute to treatment of a stroke or brain injury patient expanded long-term thinking and planning for the fellows as they develop not only their own practice but are poised to lead the profession of PRM in their own countries. The cultural aspect of rehabilitation, advanced in more mature rehabilitation systems by other team members such as nurses, recreational therapists, occupational therapists or rehabilitation counselors, appeared as new and exciting visions for health care, for the fellows, who are uniformly passionate about disability rights.This gap between established rehabilitation and the African reality leads to a critical need for the fellows to have opportunities to learn hands on in functioning rehabilitation units and teams in observation overseas. Initial fellows who had this opportunity came home confidently advocating for sophisticated rehabilitation, having seen PRM in a mature light. More technical or hands on aspects of learning are difficult to teach without travel by either the trainee or the trainer. These include spinal injections, electrodiagnosis, neurolysis, serial casting, manual exam and other skills. The variable availability of equipment such as ultrasound machines, EMGs, fluoroscopy, etc. poses a challenge for trainees to learn interventions and diagnostic techniques core to the profession internationally. Funding travel was and is a very large barrier. Additionally, as the first in their nations, current fellows have yet to meet and work with another specialist in the field of PRM.Ghana, a country in West Africa was for many years without a PRM training program until the year 2018 when the first such program was established. Prior to this, there was no PRM physician in Ghana. Christian et al did a study in 2016 focusing on rehabilitation in Ghana and noted that only 17% of the patients who required rehabilitation in Ghana's second biggest teaching hospital and referral center received it. And this care was in the form of only physical therapy provided once a day for less than a week .In 2018, the Ghana College of Physicians and Surgeons (GCPS) through its Family Medicine faculty partnered with the IRF and approved a “Sports, Exercise and Rehabilitation Medicine” (SERM) fellowship program to train Family Physicians in the field of PRM and Sports Medicine. The 2-year training in SERM in Ghana was adequate to train physicians because unlike other countries where the training takes 4 years with trainees coming straight out of medical school, the physicians being trained in the IRF program had already undergone a 3-year training in Family Medicine, qualifying as specialists and had competencies in patient safety and quality patient care, interpersonal skills and communication, medical ethics and public health, quality assurance, professionalism and research skills among others, similar to what has been outlined in the ISPRM's PRM core competency document.The program utilizes collaboration between the GCPS, IRF physician members and IRF's recruited experts in the discipline of PRM around the country to facilitate and build faculty training and create local training programs led by alumni. In addition to the online lectures, fellows training in the program go through clinical rotations in other medical specialties including Neurology, Neurosurgery, Trauma and Orthopedics, Radiology, Rheumatology, Cardiology and Psychology. They also spend time in the largest prosthetics and orthotics center in West Africa learning about the common injuries presented as well as the various products provided. Prior to COVID-19, educational exchange visits between Ghanaian physicians and academic centers in the United States (University of Michigan) was a part of the fellowship training. However, in lieu of travel restrictions brought about by the COVID-19 pandemic, the fellowship focused solely on virtual educational exchanges.The delivery of PRM training through the Sports, Exercise and Rehabilitation Medicine (SERM) sub-specialty program under the GCPS in Ghana presented the opportunity to incorporate PRM into the training of medical students. This approach in addition to exposing the students to this specialty field, also guides them towards pursuing a career in PRM.Again, with the WHO and countries pushing for Universal Health Coverage (UHC) to reach lower income populations with subsidized healthcare, it becomes imperative that medical doctors often encouraged by medical schools to work largely at the primary care level are given some pre-service exposure to PRM in line with the framework of action for UHC in Africa. The GCPS' faculty of family medicine has an existing family medicine immersion program available within the University of Ghana Medical School (UGMS), Ghana's oldest medical school. With PRM training in the GCPS being under the faculty of family medicine, this turned into a fortuitous opportunity to introduce PRM to senior clerks at the L600 level in 2021. Within a 1-week senior clerkship program, one of the morning tutorial sessions is devoted to SERM, during which a fellow introduces the fundamental concepts of PRM laced with some problem-based scenario learning. In 2021, about 200 L600 students at UGMS received this immersion in SERM, in four divided cohorts. Just within the same year, one of the private medical schools also in Accra has incorporated a similar program into its undergraduate medical program, with their smaller number of final year students being trained in a single cohort.The PRM training built within the SERM program however has not been without challenges. The first fellow faced the pioneering challenge of promoting PRM among colleague physicians. Establishing a practice and developing a clinic and inpatient unit to treat patients is paramount not only to the future outcomes for patients but also to improve hands on and case-based learning opportunities for the training program. To improve visibility both oral and poster presentations highlighting PRM and its role in managing various conditions  were made at GCPS conferences and continuous professional development workshops. Presentations were also made at the clinical meetings of the various PRM associated specialties including orthopedics, paediatrics and internal medicine. Teaching sessions were organized for family physicians who were the specialists with the largest encounter with persons who would require rehabilitation. These activities have resulted in basic PRM training also being incorporated into the 3-year Family Medicine residency training involving lectures and clinical rotations in the fellow's practice thus further exposing them to the field of PRM.The long-term goal of the IRF is to help develop local Ghanaian and other LMICs fellowship and training programs for PRM by training and supporting rehabilitation specialists. IRF's main purpose will become that of a supporting partnership to local training programs, though there will be continued educational exchanges for the benefit of both LMICs and high-income countries.The approach of incorporating PRM training within an already established undergraduate program for family medicine, looks to be a viable model, although it is still too early to assess the full impact, and promises to yield huge dividend in the near rather than long-term future. It also bodes well for an LMIC like Ghana which needs to bridge the rehabilitation access gap very quickly within the context of UHC.The IRF is currently working on the development of an online platform to house recorded didactics, journal articles, videos, and discussion platforms. Next steps in curriculum development include more direct assessment of the learner's knowledge, as well as program evaluation of the content and learning process. Further content banking of modules for enhanced access for repetition and reference. Additionally, increased collaboration with the sponsoring in-country institutions to better align didactic learning sessions, focused on building blocks of core PRM knowledge, with hands on clinical experiences. For example, aligning stroke and brain injury didactics with neurology rotations.The ultimate goal of the IRF fellowship is not to train African fellows. It is to train Africans who can train the first generation of African PRM physicians. The early success bodes well for this vision, as graduates have already become active leaders and teachers.


Intergenerational practice programs provide purposeful interactions between generations. While research reports improved social and behavioral outcomes for cohorts, no study has explored both expert and potential consumer perceptions of the implementation of intergenerational practice programs. This study conducted a Delphi study of expert opinions, as well as a national survey of potential consumers (N = 1020), to provide critical insights into the potential barriers to implementing intergenerational practice programs. Results revealed that 71.3% of potential consumers would participate in intergenerational practice programs if they were available and experts agreed that the program was of benefit to both populations. However, there were shared concerns regarding the transport, safety, and outcomes of the program for participants. Based on our findings we offer several policy considerations in the implementation of intergenerational programs.  Embedded in history is a norm that families should look after their own ,2,3. To Intergenerational practice programs are programs designed to meaningfully connect two or more generations. These programs allow organizations to facilitate a shared interactive program that is designed to provide meaningful social roles to participants, and to transmit knowledge and skills between generations . In doinAged care and childcare policies in Australia have largely been segregated due to expectations regarding care outcomes for the young and old. For example, aged care focuses on providing quality care and support to the elderly, whereas childcare focuses on providing safe and high-quality educational outcomes for children ,15,16,17Intergenerational practice programs have been found to improve children’s attitudes towards dementia, knowledge of dementia, and engagement in activities ,21,22. HIntergenerational practice programs have also been found to increase morale and motivational needs of participants, and to increase happiness and mobility for older people living in residential care. For children, intergenerational practice programs have resulted in improved confidence and increased awareness of older people around them ,23,24. IThe introduction of formal childcare programs has improved the reading rates of children accessing these services, empowered working parents to stay working and, therefore, to be productive members of society ,23. In aTo investigate the key attributes that need to be considered when developing an intergenerational practice program in Australia, data was collected from two populations. First, a Delphi process was conducted with 23 experts in aged care, childcare, social policy, and delivery of services in these areas. Stakeholders interviewed included the following: academic experts in the fields of aged care, dementia care, human resource management, childcare and strategy/organizational behavior , aged care practitioners with at least 5 years’ experience in the field as managers or clinicians , child care practitioners with at least 5 years’ experience as educational leaders or managers , and consumers . These experts were identified due to their prestige and reputation in the field.Experts were invited to participate in focus groups between November 2018–July 2019 and the research team sought to ensure that each focus group had representatives from each area of expertise to facilitate a dynamic exchange of ideas. Each focus group took approximately 90 min and was typically conducted in person with three experts. Individual discussions did take place where the expert was unable to participate in the focus group. No compensation was provided for the time of experts as they volunteered for the study. Following this, a national survey was distributed to the general population to explore the feasibility and demand for intergenerational practice in Australia. For ease of readability, this paper presents the methods of data collection separately; however, data sets were blended during analysis.The Delphi process was structured around iterations. In the first iteration, participants were provided with a set of readings for perusal prior to a panel discussion of the possible advantages and disadvantages of these models. The readings provided were drawn from literature  related The literature identified four models of care that could be implemented based on a review of the legislation in Australia: visitation, co-location (visitation or shared space), and single site. Visitation models provided childcare and aged care services on separate sites , with the younger population typically leaving their place of residence to visit the elderly. Co-located models offered intergenerational practice programs in locations that were already sharing space in the delivery of aged care or childcare services, either on the same ground or site. Co-located visiting models included provision of services on the same site but where there was no shared ground and, as such, one or both groups must walk to a shared area to participate in the program. Co-located shared site included those that already shared their spaces as part of the facility. Single site programs included those that provided both aged care and childcare models together as part of one program.From the perspective of a consumer/agency/government that you represent, please rank the models in order of preference, listing your most preferred model on top.How do you feel about each existing model?What needs to be overcome to deliver each model effectively in the Australian setting? Think about the attributes of each model—for example workforce issues, such as skill set, and award issues.To deliver intergenerational practice programs, comment on the accreditation standards that must be adhered to.In addition to the current models, can you think of a hypothetical intergenerational practice program model that would be suitable in Australia? Please explain as comprehensively as you can your ideal model and the requirements of your model.What issues need to be overcome to achieve your hypothetical intergenerational practice program model for the Australian setting?Listing other attributes that you believe must be considered in the development of each model.To conduct these panel discussions, two interviewers were present and used open-ended questions to gather the panelists’ opinions on the attributes of each of these programs. The panelists were asked to consider the relevant policy that existed and the meaning these attributes were proposed to have to participants. The legislative boundaries were identified by previous research , which wAttributes that were pre-identified as areas for discussion from the literature included the following: age of participants, curriculum, activities, occupational therapy, workforce , staff ratio, accreditation standards, and opening hours. Participants then added attributes as they saw fit as part of the discussions.The second iteration saw the views gathered in the first iteration presented back to the wider group for further comment and consultation. After which, this feedback was gathered and re-presented to the focus group panelists in the third iteration, which focused on the practicalities and client needs that may need to be considered. This process led to the identification of two models that were feasible and practical in an Australian context: The Shared Campus model and the Visiting model. These two models were chosen by experts as feasible models based on their legislative ability, economic feasibility, safety, benefits, logistics, and community acceptance of the intervention in these areas. These models and attributes were then used, in addition to a literature review of peer-reviewed articles, and additional qualitative research, to create a survey that was then distributed to the wider Australian public.Panelists were approached via email because of their expertise in their area of interest, and all participants who were approached responded positively to the invitation.“If your current care service included an Inter-generational Care program, with either a Shared campus or Visiting campus model, for the SAME price as your current care, would you use this service? If not, why not?”.The survey included questions that asked participants to assign a value to each of the two intergenerational practice models presented. The survey asked questions about participants’ willingness to pay and to explore the demand for intergenerational practice (See 35 for more details on this survey creation). To examine the key attributes required to be considered before creating an intergenerational practice service, participants were asked the following open-ended question The survey was widely distributed via in-person (4%), Facebook (1%), and online * options (95%). Snowball sampling was used to maximize the reach of possible participants through the experts engaged in the Delphi process, as well as industry partners. Surveys were also distributed online, supported by a variety of stakeholders using the program Qualtrix to administer the survey. A total of 1445 surveys were returned to the researchers. Of which, 1020 participants responded to the question posed. The eligibility to participate in this survey included: (a) be able to understand English, and (b) have a child in childcare or an adult accessing aged care services at the time of the survey. These criteria were chosen as we were interested in the views of current aged care and child care participants to provide insights into whether intergenerational practice would be of value to them at the time of the survey.“I think this would be wonderful and would benefit both generations… as long as the safety of the children is at center stage and children are not left alone with “non-carers”. That said, I would welcome this”, was initially semantically coded as, “It would be wonderful but safety is an issue”. Following a process of peer-validation [The responses to open-ended questions within this survey were analyzed using a process of reflexive Thematic Analysis (reflective TA) ,33, wherlidation ,35, in wlidation . HoweverEthics approval was received from the university . Written consent to take part in the Delphi process was obtained and returning the questionnaire to the respondents was considered consent for the survey.The results of this study revealed that 71.3% of respondents (N = 1020) would use intergenerational practice programs if they were available. However, there were concerns raised by both experts and potential consumers in creating an intergenerational practice as formal policy in Australia. This section presents these concerns by initially analyzing the shared concerns , before identifying the unique concerns raised by the consumers and experts in this study.There were four key shared concerns raised by all participants in this study. These were: 1. Logistical concerns around transportation. 2. Occupational Health and Safety (OHS) considerations such as infection control, behaviour management of older participants. 3. Ensuring the safety of all participants; consideration of the activities that were being implemented; and, 4. Considering personal factors that may impact on the desired participation in the program, such as personality and preferences.All participants felt that transporting the elderly to the young would be the most practically feasible way of bringing participants together in the visiting model. Specific concerns were raised about participants’ ability to walk, as well as the practical consideration of car seats, raised by both experts and potential consumers. Specifically, one childcare expert reported:“(To) fit in with what the needs are and logistically for us to get a bus and have 20 car seats and all the requirements…for us it suits us better to have the (elderly) coming to our immediate complex” (Child Care Expert)In addition, an aged care expert added that transporting the elderly to the young would also improve social relationships between residents and their community:“Most of the facilities have the bus and for the reasons, we can get our residents on the bus and see some with mobility, and our residents are required to maintain the friendships and their community involvement” (Aged care expert)However, programs with people with dementia may need to further consider the logistics of this with one participant noting that:“It really depends on the group. Because for some older people they’re really excited about being in a new environment. But if they had dementia for example, taking them to a facility that was developed for young children. It might take them a while to be orientated and there might be some other issues with it. So, it would be dependent on the group of older people I think” (Government policy expert)“Taking frail aged people out of their home can be difficult.”In addition, one parent was concerned with the safety and logistics of transporting older people as she reported Therefore, further consideration regarding the feasibility of who travels to whom is needed in visiting models of intergenerational practice, with particular attention and risk assessments completed considering the participants involved. In addition to transport logistics, all participants reported concerns regarding occupational health and safety considerations.Concern around infection control and the safety of participants were raised by all parties. In particular, concerns around infection control were rife across all participants, with the one expert commenting:“There’s something about when they’re little, obviously, they are themselves getting exposed to different viruses. You don’t even know when you got measles and then suddenly an old person is just about to get shingles, so there would be some infection control things also in there that would be particular… Scarlet fever, there’re a few biggies that are now around those little-ies.” In addition, two potential consumers reported concern around their own health and the health of their child, regardless of their desire for the program:“My other reason for saying no is that my immune system is compromised and being in a child care environment would not be a safe place for me.” (Aged care recipient)“Older people are bigger and they been living for 65 years they might have contact with a lot of people and can have more disease that is why I’m a bit hesitant to change his usual from child care to preschool setting now to this inter-generational care program.” (Parent)These findings identify that infection control policies need to be a priority when implementing this policy, with both children and staff required to follow these strict processes in order to protect both parties.In terms of safety, behavior and the potential for sexual/physical abuse of participants was raised by potential consumers, as well as experts. For example, an expert on dementia care commented:“What concerns me the most is that, particularly, with people with dementia, they have behavioral problems that could create issues, so you need to think about how that’s going to be managed.” (Dementia expert)In addition, a couple of parents reported concerns about the exposure to possible sexual abuse by older participants, and their desire for closely supervised programs. Specifically, one parent reported:“My only worry would be if my child was abused by an older person, you said they’re screened and it would be supervised but this sort of thing does happen and it would be a concern of mine.” (Parent).Interestingly, an older person also reported that they were concerned about this specifically, by stating,“(it’s) too risky these days of being accused by some parents that you may be interfering with their child and it only has to be the slightest rumor and you are presumed guilty. As a result, they would not participate in the program.” .“with appropriate risk/compliance measures in place”.While another parent reported that they would be happy to join in the program, These findings highlight the importance of screening and blue cards for participants in signaling the safety of the program to potential participants. Due to the nature of progressive cognitive decline, regular screening is needed of participants which would ensure constant monitoring existed. Where such screening may not be possible, the implementation of a closely supervised program would be needed to alleviate safety concerns. Another important safety signal would be the presentation of an exit plan to support participants that no longer meet entry requirementsIn addition to the transport and OHS issues identified, all participants reported that a specific focus was needed on the types of activities that underpin an intergenerational program. For example, a dementia and ageing expert reported that there was a need to individually tailor programs to the participants that are recruited because:“Somebody with younger onset that is quite high functioning. Wants to participate in what they see us something that’s purposeful and meaningful and something they enjoy. They want to choose whatever that is, and it might be that they want to go and do so some gardening, or they might want to go out to an art gallery. So, they may not want to have visits, but their activities might be quite different from other people in the group.” .Similarly, a social worker commented that it is not necessarily about the age of participants but how participant programs are tailored to address the strengths of the group:“It’s about people’s needs and the strengths and how they’re supported. Age is irrelevant enough in a way, it’s around what individuals need and how you make that individual group setting. I think that’s our greatest challenge out there.” However, a parent reported their hesitation in joining the program due to the perception that the activities planned may detract from the educational outcomes of children. Specifically, one parent reported that:“I seek specific early childhood education for my child’s development. I feel integrated care detracts from each group’s needs.” (Parent)These findings suggest that spending time focused on planning a curriculum that is tailored around educational and care outcomes for all participants is critical in achieving meaningful engagement in the program.Finally, there was an acknowledgment that this program was just not for everyone, reported by all participants. Specifically, an aged care expert reported:“All the residents that I take to the child care want to be there, but not all elderly people like children and not all children like the elderly. So, you’ve got to know the clients and know that they are willing participants. The children are willing participants. Because you can’t just be all warm and fuzzy and say; old people love children and all children… Because they don’t. It’s just the way of growing up.” (Aged Care expert).These feelings were also reciprocated by respondents in the survey, where one older person admitted that:“I no longer have much patience with young children.” (Older person)Whereas, another older person reported,“I get too tired to cope with any interaction between myself and young children for 1–2 h a day.” (Older person)Similarly, one carer reported that this program was not beneficial for her significant other because “he hates children”.From these findings it is clear that, combined, there are some barriers that need to be overcome and addressed for both parties prior to the introduction of this program. However, in addition to the barriers that were identified collectively in this study, the experts also had some additional concerns that need to be considered.Some additional logistical concerns were raised by experts in the form of staffing, as well as the marketing and timing of the program.Staffing concerns were raised about the training competencies of staff to cope with both an older and younger participant pool at the same time. Specifically, experts raised the idea about the need for specific competencies in this area:“Young children require skills in terms of human development over time, in terms of, teaching, learning, and looking at different activities. Whereas, older people, particularly those with cognitive decline, staff will often treat them as a child when that’s… They’ve got capabilities, capacity that young children do not have. I think unless you understand the aging process, you will treat the older person like someone who can’t do anything.” (Dementia expert).In addition, another dementia expert noted that:“There is a still a lot of ageism and even though people might say, “I love older people.” Young babies, young children will take priority as society tends to focus on younger people rather than older people. My concerns are that if a baby is crying or a young child cries something, that’s going to take priority over an older person who may be sitting in diapers, for example.” (Dementia expert)This suggests that there is a need for a coordinator role that does have the multiple scopes of practice, or a team that can work together to create a meaningful program that addresses any underlying ageing biases. This was further highlighted by one workforce expert who noted that:“You want to resource some sort of a coordinator that can go, “Okay, I’ve got an aged care here and I’ve got a childcare here, you’re in the same area, they’ve got a bus, you do not have a bus, so I can hook you up.” And the childcare and aged care start there, rather than have either an aged care facility or a childcare facility suiting around ringing 30 different other facilities in their region to find one that might be interested in getting on board.” (Workforce expert).Consequently, finding a team that can work together cohesively to create a purposeful program, and creating a vocational education training certificate IV level competency program on intergenerational practice is needed to address some of these training and support concerns.In addition to staffing competencies, training around death and dying is needed. However, not only is training required to support parents to talk to their children about death if a participant dies, but some processes are needed organizationally to train staff in this competency:“One of the other things and this is probably one of the greatest concerns and I don’t know how, but when you have children become fond of particular older people or vice versa, they become fond of the younger children and either the older adult dies or the child goes. How do you manage that? I think that children are pretty adaptable to death at a young age, but I think it’s still needs an element of what is actually happening and why they have gone. The parents would need to understand that this is going on as well.” (Dementia Expert)Finally, the marketing of the program needs to not call it a “day care” program, as one dementia and aged care expert reported that, “People with dementia quite often get irritated by someone saying they are going to day care.” This suggests a marketing solutions panel may be required to pilot the name of the program if the government was to support the formal introduction of intergenerational practice into the social care policy and programs.In addition, careful thought is needed regarding the timing of the program. Specifically, to fit into the “sleep cycles and morning tea” of participants. This has to consider travel time in either of the models to ensure the normal daily activities of participants are not impacted significantly by this program.The provision of care as a formal program in Australia has long been considered a social ‘good’ . HoweverGlobally, we have seen a shift from the traditional model of intergenerational families to more dispersed families, because of increased financial pressures and migration . ConsequWhile intergenerational practice programs have been gathering much interest in recent times from the media and public in Australia, as well as in the empirical literature, this study was the first of its kind to explore experts’ and potential consumers’ perceptions of these programs, specifically examining whether individuals would use intergenerational practice programs and why. In doing so, this research found a large percentage of participants would use the program if it was offered as a formal offering. For those who would not use the program some clear reasons emerged.This study demonstrates that consideration is needed about the transport of participants to each venue, and, while practically it would be easier to have the elderly visit the young, this may depend on the needs of participants. Therefore, this should be an individual program level decision made earlier on in the development. In addition, consideration and preparation of clear infection control guidelines are needed to protect the physical health of all participants, as well as the careful screening of participants with consideration to gathering blue-cards for all participants prior to participating. The concern around risks was also found recently in a study involving stakeholders interested in connecting schools to retirement aged homes  MoreoverFrom an organizational perspective, consideration to the development of grief and loss training for staff, as well as the development of a Certificate IV level qualification in intergenerational practice, to breakdown ageing perceptions and ensure protection of the rights of all participants are needed. Finally, the marketing and timing of the program would need to be considered at organizational and program levels to ensure the best outcomes for all.What is interesting, is that while this study highlighted issues for consideration when developing policy, we know that the successful provision of intergenerational practice programs relies heavily on emotional and social support ,41,42 YeIndeed, “if ‘good care’ depends disproportionately on the quality of the care relationship”  (p. 1), In conclusion, while further research is needed to explore the economic viability of intergenerational practice programs, this study has presented some key findings that allow policymakers to consider the feedback from both experts and potential consumers of this service in the future. This study identified several policy implications to be addressed. Building on previous research on policy implementation in the UK , to implWhat this study has not identified yet is the consideration to cost. In line with previous research ,28, whil