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Persons with traumatic spinal cord injury (SCI) use multiple medications (polypharmacy) to manage the high number of secondary complications and concurrent conditions. Despite the prevalence of polypharmacy and challenges associated with managing medications, there are few tools to support medication self-management for persons with SCI. The purpose of this scoping review was to identify and summarize what is reported in the literature on medication self-management interventions for adults with traumatic SCI. Electronic databases and grey literature were searched for articles that included an adult population with a traumatic SCI and an intervention targeting medication management. The intervention was required to incorporate a component of self-management. Articles were double screened and data were extracted and synthesized using descriptive approaches. Three studies were included in this review, all of which were quantitative. A mobile app and two education-based interventions to address self-management of SCI, medication management, and pain management, respectively, were included. Only one of the interventions was co-developed with patients, caregivers, and clinicians. There was minimal overlap in the outcomes measured across the studies, but learning outcomes (e.g., perceived knowledge and confidence), behavioural outcomes (e.g., management strategies, data entry), and clinical outcomes (e.g., number of medications, pain scores, functional outcomes) were evaluated. Results of the interventions varied, but some positive outcomes were noted. There is an opportunity to better support medication self-management for persons with SCI by co-designing an intervention with end-users that comprehensively addresses self-management. This will aid in understanding why interventions work, for whom, in what setting, and under what circumstances.

Purpose Self-management ability is commonly assessed in chronic disease research and clinical practice. The purpose of this study was to assess the structural and convergent validity of three commonly used self-management outcome measures in a sample of persons with neurological conditions. Methods We used data from a Canadian survey of persons with neurological conditions, which included three commonly used self-management measures: the Partners in Health Scale (PIH), the Patient Activation Measure (PAM), and the Self-Efficacy for Managing a Chronic Disease Scale (SEMCD). Confirmatory factor analysis was used to assess the structural and convergent validity of the three measures. Results When treated as single-factor constructs, none of the measurement models provided a good fit to the data. A four-domain version of the PIH was the best fitting model. Confirmatory factor analysis suggests that the three tools measure different, but correlated constructs. Conclusions While the PAM, PIH and SEMCD scales are all used as measures of patient self-management, our study indicates that they measure different, but correlated latent variables. None, when treated as single, uni-dimensional construct, provides an acceptable fit to our data. This is probably because self-management is multi-dimensional, as is consistently shown by qualitative evidence. While these measures may provide reliable summative measures, multi-dimensional scales are needed for clinical use and more detailed research on self-management.

Adults with spinal cord injury/dysfunction (SCI/D) face challenges with medications they take to manage their secondary conditions (e.g., pain, urinary tract infections, autonomic dysreflexia). With many healthcare providers typically involved in care, there are additional challenges with care fragmentation and self-management. Prior research emphasized the desire for more support with medication self-management among this population. To explore what content should be included in a medication self-management resource (i.e., toolkit) for adults with SCI/D, as well as considerations for delivery from the perspectives of adults with SCI/D, caregivers, healthcare providers, and representatives from community organizations. A concept mapping study was conducted. Participants took part in one or more of three activities: brainstorming; sorting and rating; and mapping. Participants generated ideas about the content to include in a medication self-management toolkit. Participants sorted the statements into conceptual piles and assigned a name to each. All statements were rated on a five-point Likert-type scale on importance and realistic to include in the toolkit. Participants decided on the final cluster map, rearranged statements, and assigned a name to each cluster to create visual representations of the data. Forty-four participants took part in this study. The final map contained eight clusters: 1) information-sharing and communication; 2) healthcare provider interactions and involvement; 3) peer and community connections; 4) supports and services for accessing prescription medications and medication information; 5) information on non-prescription medication and medication supplies; 6) safety and lifestyle considerations; 7) general medication information; and 8) practical information and strategies related to medication-taking. Safety and lifestyle considerations was rated as the most important and realistic to include in the toolkit. Given the limited tools to help adults with SCI/D with managing their medications, there is great potential to better support this population across all areas of medication self-management.

The use of multiple medications is common following a stroke for secondary prevention and management of co-occurring chronic conditions. Given the use of multiple medications post-stroke, optimizing medication self-management for this population is important. The objective of this scoping review was to identify and summarize what has been reported in the literature on interventions related to medication self-management for adults (aged 18+) with stroke. Electronic databases (Ovid Medline, Ovid Embase, EBSCO CINAHL, Ovid PsycINFO, Web of Science) and grey literature were searched to identify relevant articles. For inclusion, articles were required to include an adult population with stroke undergoing an intervention aimed at modifying or improving medication management that incorporated a component of self-management. Two independent reviewers screened the articles for inclusion. Data were extracted and summarized using descriptive content analysis. Of the 56 articles that met the inclusion criteria, the focus of most interventions was on improvement of secondary stroke prevention through risk factor management and lifestyle modifications. The majority of studies included medication self-management as a component of a broader intervention. Most interventions used both face-to-face interactions and technology for delivery. Behavioural outcomes, specifically medication adherence, were the most commonly targeted outcomes across the interventions. However, the majority of interventions did not specifically or holistically target medication self-management. There is an opportunity to better support medication self-management post-stroke by ensuring interventions are delivered across sectors or in the community, developing an understanding of the optimal frequency and duration of delivery, and qualitatively exploring experiences with the interventions to ensure ongoing improvement.

This study describes patterns of self-management ease and difficulty among older adults with long-term health conditions and the associations with gender, level of education, number of conditions, depression and/or health status. Cross-sectional data were collected between 2021-2022 in a municipality in northern Sweden. The survey included demographic and health-related questions. To assess self-management ease or difficulty and symptoms of depression, the Patient Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) and the Geriatric Depression Scale were used. 516 older adults between 72-73 years of age with long-term health conditions were included. Descriptive statistics and logistic regression were used to describe patterns of self-management ease and difficulty and to examine which factors were associated with self-management difficulty. Most older adults did not experience self-management difficulty. There were, however, differences between the seven PRISM-CC domains. The Internal domain (managing negative emotions and stress) had the highest percentage (25.39%) of older adults with self-management difficulty. In all domains, there was also a subgroup of individuals (  = 26) that had noticeably lower PRISM-CC scores (more difficulty). A strong association between having depressive symptoms or having poor health status and self-management difficulty was found. This study highlights the need for regular mental health screenings and individualized self-management support for older adults. Future research should explore intervention strategies that integrate mental health support into self-management programs for individuals with long-term health conditions.

A dramatic increase in the use of videoconferencing occurred as a response to the COVID-19 pandemic, including delivery of chronic disease management programs. With this increase, clients' openness to and confidence in receiving any type of telehealth care has dramatically improved. However, the rapidity of the response was accomplished with little time to learn from existing knowledge and research. The purpose of this scoping review was to identify features, barriers, and facilitators of synchronous videoconference interventions that actively engage clients in the management of chronic conditions. Using scoping review methodology, MEDLINE, CINAHL, and 6 other databases were searched from 2003 onward. The included studies reported on structured, one-on-one, synchronous videoconferencing interventions that actively engaged adults in the management of their chronic conditions at home. Studies reporting assessment or routine care were excluded. Extracted text data were analyzed using thematic analysis and published taxonomies. The 33 included articles reported on 25 distinct programs. Most programs targeted people with neurological conditions (10/25, 40%) or cancer (7/25, 28%). Analysis using the Taxonomy of Every Day Self-Management Strategies and the Behavior Change Technique Taxonomy version 1 identified common program content and behavior change strategies. However, distinct differences were evident based on whether program objectives were to improve physical activity or function (7/25, 28%) or mental health (7/25, 28%). Incorporating healthy behaviors was addressed in all programs designed to improve physical activity or function, whereas only 14% (1/7) of the programs targeting mental health covered content about healthy lifestyles. Managing emotional distress and social interaction were commonly discussed in programs with objectives of improving mental health (6/25, 24% and 4/25, 16%, respectively) but not in programs aiming at physical function (2/25, 8% and 0%, respectively). In total, 13 types of behavior change strategies were identified in the 25 programs. The top 3 types of strategies applied in programs intent on improving physical activity or function were feedback and monitoring, goals and planning, and social support, in contrast to shaping knowledge, regulation, and identity in programs with the goal of improving mental health. The findings suggest that chronic condition interventions continue to neglect evidence that exercise and strong relationships improve both physical and mental health. Videoconference interventions were seen as feasible and acceptable to clients. Challenges were mostly technology related: clients' comfort, technology literacy, access to hardware and the internet, and technical breakdowns and issues. Only 15% (5/33) of the studies explicitly described compliance with health information or privacy protection regulations. Videoconferencing is a feasible and acceptable delivery format to engage clients in managing their conditions at home. Future program development could reduce siloed approaches by adding less used content and behavior change strategies. Addressing client privacy and technology issues should be priorities.

Purpose To assess the validity of the Patient Activation Measure (PAM13) of patient activation in persons with neurological conditions. Methods \"The Everyday Experience of Living with and Managing a Neurological Condition\" (The LINC study) surveyed 948 adults with neurological conditions residing in Canada in 2011 and 2012. Using data for 722 respondents who met coding requirements for the PAM-13, we examined the properties of the measure using principle components analysis, inter-item correlations and Cronbach's alpha to assess unidimensionality and internal consistency. Rasch modeling was used to assess item performance and scaling. Construct validity was assessed by calculating associations between the and known correlates. Results PAM-13 provides a suitably reliable and valid instrument for research in patients with neurological conditions, but scaling problems may yield measurement error and biases for those with low levels of activation. This is of particular importance when used in clinical settings or for individual client care. Our study also suggests that measurement of activation may benefit from tailoring items and scaling to specific diagnostic groups such as people with neurological conditions, thus allowing the PAM-13 to recognize unique attributes and management challenges in those conditions. Conclusions The PAM-13 is an internally reliable and valid tool for research purposes. The use of categorical activation \"level\" in clinical settings should be done with caution.

Background Medications are among the most common health interventions, with certain populations, such as individuals with spinal cord injury/dysfunction (SCI/D), commonly prescribed multiple medications. Consequently, adults with SCI/D often engage in activities related to medication self-management, but there are few comprehensive resources for this population. The objective of this study was to co-design the prototype of a toolkit to support medication self-management among adults with SCI/D. Methods We conducted a participatory multi-methods study, using the Good Things Foundation Pathfinder Model as a guide for the co-design process. Participants included adults with SCI/D, caregivers, and healthcare providers. Following the model’s three stages, we: (1) understood and defined the problem by conducting a scoping review, concept mapping study, and working group sessions; (2) created a prototype of the toolkit through working group sessions and website development meetings; and (3) tested the prototype through working group sessions. Results The working group consisted of 19 individuals, including 9 adults with SCI/D, 1 caregiver, and 9 healthcare providers. In Stage 1, we identified the need for a comprehensive medication self-management resource through a scoping review, brainstormed content and delivery methods, and thematized and prioritized the content into eight categories through a concept mapping study. The concept mapping study included 44 participants, including 21 adults with SCI/D, 11 caregivers, and 12 healthcare providers. In Stage 2, feedback on the content mapped onto five categories: first impressions, message and purpose, visual elements, layout and flow, and graphics. The name, MedManageSCI, was selected by the working group. Through an iterative process with the website development company, an online version of the toolkit prototype was created ( www.medmanagesci.ca ). In Stage 3, participants provided recommendations to improve the website’s functionality and navigation. Conclusions The co-design of the MedManageSCI prototype is a significant step toward addressing the medication self-management needs of adults with SCI/D. The implications of this work extend beyond SCI/D, highlighting the importance of tailored digital health resources for populations with complex healthcare needs. Future work is needed to refine the content, assess the feasibility, acceptability, and appropriateness of the toolkit, and examine outcomes related to medication self-management.

Innovative approaches to community-level data collection are crucial to inform policies and programs that support people in aging well within their communities. For example, community-level data can proactively identify unmet health needs, inform preventative care strategies, and ensure the equitable distribution of resources that enable older adults to age in place. This paper presented a substudy of a larger community-based project designed to identify community-dwelling older adults' concerns about their well-being and connect them with resources to help them age well at home. The substudy aimed to identify motivations that influence older adults' engagement in research and barriers to their participation. Data collection involved qualitative semistructured interviews with 27 older adults, with a mean age of 77 (SD 5.4), who had completed a comprehensive assessment. Purposeful sampling prioritized older adults who lived in rural areas, had more than one health condition, and represented diverse ethnicities, while attempting to reach equal numbers of participants across the participating communities. Interviews were conducted by trained research team members using an interview guide focused on reasons for research participation and perceptions of the assessment and resource action plan. Meeting minutes, gathered during 35 biweekly or monthly sessions with community coordinators, captured real-time reflections on recruitment processes, challenges, and community-specific factors influencing participation. Thematic analysis was completed using both inductive and deductive approaches. Older adult participants were primarily female (n=22, 82%), of European (n=19, 70%) or Acadian (n=8, 30%) descent, university educated (n=14, 52%), with one or more chronic health conditions (n=26, 96%). Older adults reported 2 main reasons for participating: planning for the future and helping their community. At the same time, barriers to participation identified included communication challenges, fear of scams, and institutional skepticism. Participants emphasized a desire for practical outcomes from the research, especially related to aging-in-place supports. Although trust in local, personal relationships facilitated participation, skepticism toward institutions and digital communication channels were barriers to participation. This research highlighted the need to tailor communication strategies to older adults by understanding factors influencing engagement. Addressing institutional skepticism and leveraging trusted community members are possible strategies to overcome barriers to successful engagement in community-based research. These findings advance our understanding of why older adults participate in research and suggest ways to improve recruitment strategies. Participation was motivated not only by personal benefit but also by a strong sense of civic responsibility, social connection, and a desire to contribute to future community well-being. Framing research as community-driven and future-oriented, rather than problem- or deficit-based, studies can resonate more deeply with older adults. Integrating research within existing, trusted local networks and venues helps build legitimacy and accessibility-especially in rural contexts where institutional trust may be low and digital communication less effective.

Purpose The Patient Activation Measure (PAM-13) measures patients' knowledge, skill, and confidence in chronic condition self-management. The purpose of this study was to assess the validity of PAM-13 (English version) among English-speaking adults with cardiac conditions in Singapore. Methods A cross-sectional study was conducted in a convenient sample of 270 heart clinic patients. Using the unitary concept of validity, evidence of (1) internal structure via data quality, unidimensionality, differential item functioning, and internal consistency, (2) response process through item difficulty and item fit using Rasch modeling, and (3) relationship to other variables via correlations with depression and self-efficacy were examined. Results The item response was high with only one missing answer. All items had a small floor effect, but nine out of 13 items had a ceiling effect larger than 15 %. Cronbach's α was 0.86, and average inter-item correlations was 0.324. Results suggested unidimensionality; however, differences in item difficulty ranking were found. A low, negative correlation was found with depression, while a moderate, positive correlation was found with self-efficacy. Conclusion Evidence in all three areas of validity were mixed. Caution should be exercised when using categorical activation \"level\" to inform clinical decisions.