The number of children with chronic conditions is increasing, affecting a growing number of caregivers. Informal caregiving adversely impacts health, social contacts, and the economy, highlighting the importance of improved caregiver well-being. Semi-structured interviews were conducted with caregivers identified through a patient database at a Swedish hospital. Using a phenomenological approach with a thematic analysis, we explored the experiences of caregivers of children with the example of the condition Legg-Calvé-Perthes disease. The caregivers were highly worried and feared the unknown. Every uncertainty was experienced as consuming. By gathering information, they tried to regain control. Lacking information and communication from health care professionals created frustration. Half of the caregivers described that it negatively affected their mental health. Counselors and physiotherapists became crucial by taking on a coordinative and holistic role. Despite hardships, most caregivers found meaning in life and adapted to the new reality. The disease often had no negative effects on career or finances, and sometimes improved family relationships. Numerous parallels with our findings are evident across a broader caregiver population, indicating similar support requirements regardless of disease. Our 'Care for Caregivers Framework' illustrates caregivers' experiences and highlights possible areas for future research.

Purpose We examined walking ability, fatigue, health-related quality of life, anxiety, depression, cognitive, and physical function as correlates of self-reported sedentary behavior in adults with multiple sclerosis (MS). Methods 465 adults with MS completed surveys including the Marshall Sitting Questionnaire (MSQ), Multiple Sclerosis Walking Scale (MSWS-12), Fatigue Severity Scale (FSS), Hospital Anxiety and Depression Scale, Short Form Health Survey-12 physical and mental (SF-12 PCS and MCS), along with clinical characteristics and demographics surveys (e.g., MS type, patient-determined disease steps). Zoom-based assessments of the California Verbal Learning Test II [CVLT-II], the Symbol Digit Modalities Test, and the 30-second Sit-to-Stand were completed. Statistical analyses included bivariate correlations and a multivariable linear regression that identified correlates of sedentary behavior in MS. Results The bivariate analyses indicated weak, but significant associations among MSQ and FSS (r = .092), SF-12 MCS (r = −0.111), and CVLT-II (r = −0.092). The multivariate regression demonstrated that SF-12 MCS scores entered the model in Step 1 (b = −0.111, p < .05), and CVLT-II entered the model in Step 2 (b = −0.090, p > .05). Conclusion We identified FSS, SF-12 MCS, and CVLT-II as correlates of sedentary behavior in adults with MS. SF-12 MCS was the strongest predictor of sedentary time.

Purpose Inherited retinal diseases (IRDs) are invisible disabilities that cause progressive vision loss. Living with an IRD impacts life beyond visual impairment, requiring adaptation to shifting identity and social roles. This study investigated the barriers and facilitators people with IRDs face in communicating about their condition and needs. Methods Semi-structured interviews were undertaken with 16 individuals with IRDs (aged 20–69 years) and 5 family members. Interviews were transcribed and analysed using thematic analysis. Results Five key themes were identified describing communication challenges across various relationships and social contexts: (1) clinician communication, highlighting the impact of interactions with healthcare professionals; (2) intrinsic barriers from participants’ own feelings coming to terms with their diagnosis; (3) family communication, influenced by family dynamics and their personal experience with the condition; (4) comprehension gap, capturing others’ misconceptions of vision loss as a spectrum and an invisible disability; and (5) disclosing vision loss, describing decisions about when and how to share an IRD diagnosis with others. Conclusions Support for individuals with vision loss requires coordinated action across multiple networks, including clinician education, accessible mental health services for individuals and carers, and efforts to improve societal understanding of the experience of vision loss.

Purpose This project explores the use of mixed and augmented reality technologies in the development of a motivating stroke rehabilitation application that supports adherence and that is based on the indigenous Māori health model Te Whare Tapa Whā which incorporates taha tinana (physical health), taha wairua (spiritual health), taha whānau (family health), and taha hinengaro (mental health). Methods With expert stakeholder input and Māori design partners, we designed APO: a mixed reality, social, puzzle prototype application using a smartphone and tangible wooden blocks with digital photo overlays. We conducted co-creation sessions with seven people living with stroke who used the prototype and provided feedback. Results Using reflexive thematic analysis based on both APO and existing rehabilitation practices, we conceptualise three themes: creative pursuits with physical aspects encourage regular paretic limb use, social interactions around shared media represent meaningful connections with friends, family and communities, and, routines of use, particularly through spacing out activities through the week, can help balance participants’ feelings of exertion. Conclusion By using the insights from the co-creation study, we then refined the APO design to further support the multi-faceted aspects of rehabilitation and health for people living with stroke.

Purpose The prevalence of post-traumatic stress injury (PTSI) among first responders (FR) is high and often leads to work disability. Our research examined current implementation approaches of PTSI programs, as well as key facilitators and challenges, in Alberta FR organizations. Methods Using a qualitative study design, guided by implementation frameworks, we conducted semi-structured interviews with 20 key informants with program implementation experience in Alberta, Canada FR organizations. Interview questions were open-ended and asked about experiences related to implementation including barriers, facilitators, and key lessons. Interviews were recorded, and data analysis determined key implementation themes. Results Most FR organizations were in the planning phase of PTSI program implementation. Analysis revealed six overarching themes, ‘getting buy-in first’; ‘collaborating and champions’; ‘ongoing awareness building’; ‘ensuring adequate resources’; ‘importance of planning’; and ‘one-size does not fit all’. Mostly informal implementation processes were reported, along with organizational buy-in. Conclusions We found that FR organizations were developing and implementing PTSI programs. However, there were implementation challenges, including the lack of formal implementation plans and resource needs. Further research on program implementation in FR organizations is needed to ensure that programs are implemented in a way that maximizes their effectiveness in reducing work disability among FR members.

Siblings of individuals with neurodevelopmental conditions are vulnerable to poor mental health and well-being, with additional challenges for those in rural areas. Purpose This convergent parallel mixed methods study examined the role of protective factors (resilience, family functioning, and social support) in explaining sibling well-being, alongside this population’s support preferences and experiences. Materials and Methods We surveyed 93 siblings of individuals with a neurodevelopmental condition aged between 16–30 years, currently or previously living in regional and remote areas of Australia. The majority of the sample identified as women (79.6%), with an average age of 23 years (SD = 4.6). Results A hierarchical multiple regression showed resilience and social support combined, but not family functioning, accounted for a significant 58% of variance in well-being. A reflexive thematic analysis of qualitative data identified that siblings were often self-reliant through necessity, and desired services and supports that acknowledged them first as individuals, not just siblings. Siblings commonly accessed social support through their local communities, and preferred support from people who understood neurodevelopmental conditions and the sibling role. Conclusion Providing accessible, resilience-based interventions for siblings, and empowering local communities to provide greater support will benefit the well-being of rural siblings and their families.

Purpose Physical activity may improve the function and well-being of individuals with Charcot-Marie-Tooth disease (CMT). We conducted a study to explore patients’ experiences related to physical activity, investigating how physiotherapists may promote and facilitate activity. Materials and methods A qualitative study eliciting 10 patients’ and 12 physiotherapists’ views in four focus groups. Results Previous experiences shaped how individuals with CMT viewed physical activity. Both individuals with CMT and physiotherapists emphasised a tailored approach that acknowledged personal perspectives, as feeling understood increased motivation. Physiotherapists could facilitate activity and mastery by validating patients’ bodily experiences, reassuring them that occasional pain and fatigue are normal, raising awareness of how daily cumulative demands affect symptoms, and assessing signs of abnormal responses. Individuals with CMT recognised that inactivity led to stiffness and heaviness, motivating them to stay active. Both groups called for improved knowledge, collaboration, access to skilled physiotherapists, and stronger professional networks. Conclusion Previous experiences and beliefs about the benefits and harms of physical activity influence individuals with CMT regarding their views on physical activity. Physiotherapists may promote engagement by nurturing therapeutic relationships and personalising their approach. The shortage of qualified professionals and facilities may restrict opportunities for those with CMT.

Purpose This study aimed to link the Common Variable Immune Deficiency Quality of Life (CVID-QoL) and Short Form-36 (SF-36) questionnaires to the International Classification of Functioning, Disability and Health (ICF) using ICF linking rules and to compare their ICF-based content coverage. Methods Two researchers independently analyzed each CVID-QoL and SF-36 item following the ICF linking rules by Cieza et al. Meaningful concepts were identified, linked to the most appropriate ICF categories, and evaluated for inter-rater agreement using kappa, with discrepancies resolved by expert consultation. Results A total of 32 CVID-QoL items yielded 47 ICF code assignments, corresponding to 25 unique ICF categories, whereas the SF-36 yielded 61 assignments, corresponding to 25 unique ICF categories. In the CVID-QoL, the most represented main-concept domains were b1 mental functions, b4 cardiovascular, hematological, immunological, and respiratory functions, and d7 interpersonal interactions and relationships, whereas in the SF-36 the most represented domains were b1 mental functions, d2 general tasks and demands, and d4 mobility. Discussion The CVID-QoL appears to assess the disease more broadly, as it includes content related to body functions and structures, activities and participation, and environmental factors. Therefore, compared with the generic SF-36, it may better reflect the disease-specific impact of CVID. Implications for Rehabilitation Using ICF-linked disease-specific tools in clinical practice can improve the assessment process and guide more holistic, patient-centered interventions for individuals with Common Variable Immunodeficiency (CVID). Linking the Common Variable Immune Deficiency Quality of Life (CVID-QoL) questionnaire to the ICF framework enables a comprehensive understanding of disease-specific functional limitations in patients with Common Variable Immune Deficiency (CVID). The Common Variable Immune Deficiency Quality of Life (CVID-QoL) captures unique aspects of physical, emotional, and environmental challenges not addressed in generic Health-Related Quality of Life (HRQoL) tools, such as the SF-36, highlighting its relevance for individualized rehabilitation planning.

Purpose Since its inception, neurorehabilitation principles guiding patient/client assessment and management have evolved alongside scientific discoveries. Historically, three models have shaped neurorehabilitation assessment and intervention: muscle-reeducation, neurotherapeutic facilitation, and contemporary task-oriented approaches, grounded in reflex, hierarchical, and systems theories of motor control and recovery. In recent decades, neuroplasticity research has challenged established principles of neurorehabilitation, supporting a shift toward an updated model. The purpose of this paper is to describe the implications of neuroplasticity research for neurorehabilitation and propose a new model that integrates emerging theories of adaptive neuroplasticity promotion in rehabilitation. Methods This special interest paper explores the current understanding of neuroplasticity and the implications of these findings for management of neurologic movement dysfunction. Based on the current literature, we propose and describe a fourth neurorehabilitation model, the Neuroplasticity-Based Model (NBM), that may better guide clinical assessment and management. Results The NBM’s five therapeutic aims include optimal intervention delivery, experiences designed to focus attention, intentional experiences to induce physiological stress, health promotion strategies, and behavioral change support. These aims are tailored to individual factors to create client-centered interventions that promote adaptive neuroplasticity. Conclusion The NBM offers a comprehensive framework for integrating emerging neuroplasticity discoveries into neurorehabilitation practice.

Purpose Neurodegenerative diseases can impair food literacy skills such as meal planning, cooking, and management of food resources. This study aimed to identify the specific needs of individuals with Parkinson’s disease and multiple sclerosis regarding functional food literacy, to inform the development of targeted interventions that promote nutritional autonomy. Methods Four focus groups were conducted with 10 participants, including individuals living with a neurodegenerative disease and caregivers. Data were collected through semi-structured verbal questions and analyzed thematically using the International Classification of Functioning, Disability and Health (ICF), complemented by a functional food literacy model. Results Participants reported significant challenges related to grocery shopping and cooking, mainly due to cognitive and physical fatigue. Difficulties using kitchen tools were also described, linked to reduced strength and mobility. All participants emphasized the essential role of caregiver support. Interest was expressed in assistive devices and learning strategies to facilitate food-related tasks. Some participants used compensatory strategies, such as task anticipation, sequencing, and selecting simple recipes. Conclusions This study led to eight recommendations and highlighted the need for a tailored functional food literacy intervention for individuals with neurodegenerative diseases. Such an intervention could enhance nutritional autonomy, improve quality of life, and reduce caregiver burden.