Medication self-management toolkits for adults with multiple sclerosis: A scoping review.

Background: Multiple sclerosis (MS) is an autoimmune disease that is often treated with multiple medications. Managing multiple medications, also known as polypharmacy, can be challenging for persons with MS. Toolkits are instructional resources designed to promote behaviour change. Toolkits may support medication self-management for adults with MS, as they have been useful in other populations with chronic conditions. Objective: The main purpose of this review was to identify and summarize medication self-management toolkits for MS, as related to the design, delivery, components, and measures used to evaluate implementation and/or outcomes. Methods: A scoping review was conducted following guidelines by JBI. Articles were included if they focused on adults (18 years or older) with MS. Results: Six articles reporting on four unique toolkits were included. Most toolkits were technology-based, including mobile or online applications, with only one toolkit being paper-based. The toolkits varied in type, frequency, and duration of medication management support. Varying outcomes were also identified, but there were improvements reported in symptom management, medication adherence, decision-making, and quality of life. The six studies were quantitative in design, with no studies exploring the user experience from a qualitative or mixed-methods design. Conclusions: There is limited research on medication self-management toolkits among adults with MS. Future development, implementation, and evaluation mixed-methods research are needed to explore user experiences and overall design of toolkits.

Medication self-management interventions for persons with stroke: A scoping review.

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.

A scoping review of medication self-management intervention tools to support persons with traumatic spinal cord injury.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

The impact of the COVID-19 pandemic on primary care physicians and nurses in Nova Scotia: a qualitative exploratory study.

BACKGROUND: The COVID-19 pandemic has brought immense disruption worldwide, dramatically altering the ways we live, work and learn on a day-to-day basis; however, few studies have investigated this from the perspective of primary care providers. In this study, we sought to explore the experiences of primary care providers in the province of Nova Scotia, with the intention of understanding the impact of the COVID-19 pandemic on primary care providers' ability to provide care, their information pathways, and the personal and professional impact of the pandemic. METHODS: We conducted an exploratory qualitative research study involving semistructured interviews conducted via Zoom videoconferencing or telephone with primary care providers (physicians, nurse practitioners and family practice nurses) who self-identified as working in primary health care in Nova Scotia from June 2020 to April 2021. We performed a thematic analysis involving coding and classifying data according to themes. Emergent themes were then interpreted by seeking commonalties, divergence, relationships and overarching patterns in the data. RESULTS: Twenty-four primary care providers were interviewed. Subsequent analysis identified 4 interrelated themes within the data: disruption to work-life balance, disruptions to "non-COVID-19" patient care, impact of provincial and centralized policies, and filtering and processing an influx of information. INTERPRETATION: Our findings showed that managing a crisis of this magnitude requires coordination and new ways of working, balancing professional and personal life, and adapting to already implemented changes (i.e., virtual care). A specific primary care pandemic response plan is essential to mitigate the impact of future health care crises.

Managing Fatigue in Parkinson's Disease: Protocol for a Pilot Randomized Controlled Trial.

Background. Fatigue is a disabling symptom of Parkinson's disease (PD). Managing Fatigue: A Six-Week Energy Conservation Intervention was developed to improve the occupational performance of people with fatigue. Efficacy of this program has not been established in PD. Purpose. This study will assess feasibility of the Managing Fatigue: Individual Program (MFIP) delivered via videoconference, the Randomized Controlled Trial (RCT) protocol, and the preliminary effectiveness of the MFIP. Methods. A mixed-methods approach nested in a pilot RCT, randomizing 54 participants 1:1 to usual care or MFIP arms, will be employed to evaluate the feasibility and preliminary effectiveness of MFIP. Qualitative and quantitative data will be collected simultaneously. Implications. Results will identify evidence for establishing protocol requirements for a full-scale RCT. Knowledge of the effectiveness of the one-to-one videoconference delivery format of the program has the potential to enhance the accessibility and the quality of care of the PD population.

An exploration of attitudes and preferences towards medications among healthcare providers and persons with spinal cord injury/dysfunction: a qualitative comparison.

PURPOSE: To compare the attitudes and preferences of persons with spinal cord injury/dysfunction (SCI/D) and healthcare providers regarding prescription medications, over-the-counter medications, and natural health products (NHPs). MATERIALS AND METHODS: A qualitative study involving semi-structured interviews with healthcare providers (n = 32) and persons with SCI/D (n = 19) in Canada. Inductive descriptive and interpretive analyses were conducted using data display matrices and a constant comparative approach. RESULTS: Participants described differing perceptions of therapeutic benefits based on medication type, with shared attitudes about the therapeutic benefits of prescription medications and differing views about the effectiveness of NHPs. Despite the perceived effectiveness of prescription medications, persons with SCI/D preferred to avoid them due to concerns about side effects, safety, and stigma. Persons with SCI/D were often concerned about the long-term safety of prescription medications, whereas providers focused more on medication-related addictions. Participants discussed stigma relating to prescription medications, NHPs, and medicinal marijuana. CONCLUSION: Healthcare providers and persons with SCI/D described different attitudes about and preferences for pharmacotherapeutic products, contributing to challenges in optimizing medication management. Strategies to improve medication management include shared decision-making to incorporate patient preferences into care plans and explicit discussions about long-term medication safety. Further, steps are needed to combat the stigma associated with medication use.Implications for rehabilitationFollowing a person-centered approach to shared decision-making, prescribers should initiate explicit conversations about patient medication preferences, short and long-term prescription medication side effects, and alternative treatment options.Regarding prescription medication safety, persons with spinal cord injury/dysfunction focused on the long term impact of medications, while providers focused on medication-related addictions, highlighting a disconnect that should be discussed during initiation, continuation, or discontinuation of a medication.Providers should be mindful of the stigma associated with taking multiple prescription medications, including medicinal marijuana, as well as the stigma associated with over-the-counter medications and natural health products.Providers could benefit from education about spinal cord injury/dysfunction-specific prescription medications and could benefit from increased education about natural health products.

Spinal cord injury/dysfunction and medication management: a qualitative study exploring the experiences of community-dwelling adults in Ontario, Canada.

PURPOSE: To explore the attitudes, beliefs and experiences pertaining to the management of prescribed and unprescribed medications among community-dwelling adults with spinal cord injury/dysfunction (SCI/D) in Ontario, Canada. MATERIALS AND METHODS: In-depth semi-structured interviews were conducted by telephone. Each interview was audio-recorded, transcribed verbatim and analyzed using inductive thematic analysis. RESULTS: Of the 19 participants, 11 were male and 8 were female, with an age range from 36 to 76 years; 14 participants had traumatic SCI and 5 had non-traumatic spinal cord dysfunction. All but three participants were taking five or more medications, including prescription medications, over-the-counter medications and natural health products. The three main themes identified were: disruptive nature of medications, fear of negative outcomes and self-management: playing a critical role. CONCLUSIONS: Medication management is a complex, multifaceted and non-linear process. Persons with SCI/D described experiences with medication-taking that are not well understood by current medication management frameworks. Thus, it is essential to broaden our lens and situate persons with SCI/D medication-taking experiences within self-management frameworks to allow for a more comprehensive and reflective understanding of their experiences. Based on the findings from this study, recommendations for future research, practice and policy have been suggested.IMPLICATIONS FOR REHABILITATIONPersons with spinal cord injury/dysfunction identified numerous challenges and concerns with medication use post-injury.Educational medication management programs should be implemented post-discharge to improve the state of knowledge around medications (indication, side effects, strategies for taking medications) and how to optimize medication management.In order to optimize experiences and outcomes, there is a need for explicit and ongoing discussions around medication management between persons with spinal cord injury/dysfunction and their healthcare providers.

Managing everyday life: Self-management strategies people use to live well with neurological conditions.

OBJECTIVE: This paper uses the Taxonomy of Everyday Self-management Strategies (TEDSS) to provide insight and understanding into the complex and interdependent self-management strategies people with neurological conditions use to manage everyday life. METHODS: As part of a national Canadian study, structured telephone interviews were conducted monthly for eleven months, with 117 people living with one or more neurological conditions. Answers to five open-ended questions were analyzed using qualitative content analysis. A total of 7236 statements were analyzed. RESULTS: Findings are presented in two overarching patterns: 1) self-management pervades all aspects of life, and 2) self-management is a chain of decisions and behaviours. Participants emphasized management of daily activities and social relationships as important to maintaining meaning in their lives. CONCLUSION: Managing everyday life with a neurological condition includes a wide range of diverse strategies that often interact and complement each other. Some people need to intentionally manage every aspect of everyday life. PRACTICE IMPLICATIONS: For people living with neurological conditions, there is a need for health providers and systems to go beyond standard advice for self-management. Self-management support is best tailored to each individual, their life context and the realities of their illness trajectory.

Exploring the perspectives on medication self-management among persons with spinal cord injury/dysfunction and providers.

RATIONALE: Spinal cord injury/dysfunction (SCI/D) is an exemplar condition with a high prevalence of secondary complications, chronic conditions and use of multiple medications (polypharmacy). Optimizing medication self-management is important for persons with SCI/D to improve outcomes; however, there is a lack of research on how healthcare/service providers and persons with SCI/D experience medication self-management. OBJECTIVE: To explore attitudes and experiences of medication self-management from the perspectives of persons with SCI/D and providers, and to explore the extent to which the Taxonomy of Everyday Self-management Strategies (TEDSS) framework captured participants' experiences with medication self-management. METHODS: In-depth, semi-structured interviews were conducted by telephone until data saturation was reached. Interviews were transcribed verbatim and analyzed using constant comparative approaches. The TEDSS framework was adapted and applied deductively. RESULTS: Fifty-one individuals participated in this study, 32 providers and 19 persons with SCI/D. Disease controlling strategies was the domain discussed in most detail by all participants. In this domain, participants discussed managing medications and treatments, monitoring/managing side effects, and controlling complications. Process strategies (problem-solving, decision-making) and resource strategies (seeking support) were the next most frequently discussed domains. Among all participant groups, there was a lack of detailed discussion of social interactions, health behaviour, and internal strategies. Medication self-management support was not extensively discussed by any group. CONCLUSION: This study highlighted the complex nature of medication self-management. While persons with SCI/D and providers discussed similar components of the TEDSS framework, providers had minimal reflections on the impact of medication self-management on everyday life. This study identified the need for explicit discussions between providers and persons with SCI/D, involving all components of self-management and self-management support in order to improve medication self-management.

"The strategies are the same, the problems may be different": a qualitative study exploring the experiences of healthcare and service providers with medication therapy management for individuals with spinal cord injury/dysfunction.

BACKGROUND: Persons with spinal cord injury/dysfunction (SCI/D) often take multiple medications to treat their secondary complications and chronic conditions (multimorbidity). Multiple healthcare and service providers are often involved in care, which can result in increased risk of fragmentation of care. Optimal medication therapy management (MTM) is essential to ensure therapeutic benefit from medication regimens. However, little is known about the experiences of providers in supporting persons with SCI/D with MTM. METHODS: Telephone interviews were conducted to explore healthcare and service providers' experiences with MTM for persons with SCI/D. Participants were recruited through clinical organizations and researchers' personal contacts. Participants were purposefully selected for diversity in profession and were required to be English speaking and to have provided care to at least one person with SCI/D. The qualitative interviews followed a semi-structured interview guide. Data display matrices were used in a constant comparative process for descriptive and interpretive analysis. RESULTS: Thirty-two interviews were conducted from April to December 2018. Each profession had distinct views on their roles in facilitating MTM for persons with SCI/D, which aligned with their respective scopes of practice. Shared provider tasks included tailoring medications, providing education, and exploring medication alternatives. Most participants felt that the care they provided for persons with SCI/D was similar to the care that they provided to other patients, with some differences relating to the physical limitations and medical complexity associated with SCI/D. Five factors were identified that impacted participants' abilities to provide MTM for persons with SCI/D: patient self-management skills, provider knowledge and confidence, provider-patient relationships, interprofessional collaboration, and provider funding models including the use of technology-supported consultations. CONCLUSION: While participants described commonalities in the barriers and enablers associated with providing MTM to persons with SCI/D and other populations, there were unique considerations identified. These SCI/D-specific considerations resulted in recommendations for improvements in MTM for this population. Future research should include perspectives from persons with SCI/D.

Spinal cord injury and polypharmacy: a scoping review.

Purpose: The purpose of this scoping review was to map the scope of the literature on polypharmacy among individuals with spinal cord injury or dysfunction (SCI/D).Material and methods: Five electronic databases were searched for literature published between January 1990 and July 2018. The following keywords were searched using Boolean operators, wild cards, proximity operators and truncations: spinal cord injuries, multiple medications, polypharmacy. The initial search identified 1,459 articles; 1,098 remained after deduplication. Following the title and abstract screen, 81 full-texts were reviewed, and 18 met all of the eligibility criteria for inclusion in the review.Results: Of the 18 studies identified, less than half defined polypharmacy. Definitions varied in the types and number of medications. Older age, higher level of injury and greater severity of injury were factors related to polypharmacy. Negative clinical outcomes, such as drug-related problems and bowel complications were identified.Conclusions: This scoping review identified a paucity of research on polypharmacy post-SCI/D, highlighting a need for future research. To improve the state of knowledge, there is a need to better understand factors and clinical outcomes related to polypharmacy in persons with SCI/D and to explore experiences of persons with SCI/D, caregivers and clinicians relating to polypharmacy.Implications for rehabilitationPrescribers should be aware of the factors and negative clinical outcomes related to polypharmacy and spinal cord injuries/dysfunction, especially for patients with higher level and more severe injuries.Prescribers should work with their patients with spinal cord injuries/dysfunction to avoid inappropriate polypharmacy and to integrate appropriate alternatives to medications.Optimizing medication management should be a significant focus of spinal cord injury/dysfunction rehabilitation and research in order to develop targeted interventions that improve patient outcomes.

Self-management of pain and depression in adults with spinal cord injury: A scoping review.

Context: Pain and depression are two prevalent secondary complications associated with spinal cord injury (SCI) that negatively impact health and well-being. Self-management strategies are growing in popularity for helping people with SCI to cope with their pain and depression. However, there is still a lack of research on which approaches are best suited for this population.Objective: The aim of this scoping review was to determine what is known about the self-management of pain and depression through the use of pharmacological and non-pharmacological therapies in adults with SCI.Methods: Seven electronic databases were searched for articles published between January 1, 1990 and June 13, 2017. Grey literature was searched and additional articles were identified by manually searching the reference lists of included articles.Results: Overall, forty-two articles met the inclusion criteria; with the majority reporting on the self-management of pain, rather than on depression or on both complications. Non-pharmacological interventions were more likely to include self-management strategies than pharmacological interventions. A limited number of studies included all of the core self-management tasks and skills.Conclusions: There are significant knowledge gaps on effective self-management interventions for pain and depression post-SCI. There is a need to develop interventions that are multi-faceted, which include both pharmacological and non-pharmacological therapies to address multimorbidity.

Medication adherence for persons with spinal cord injury and dysfunction from the perspectives of healthcare providers: A qualitative study.

Context: People with spinal cord injury and dysfunction (SCI/D) often take multiple medications (i.e. polypharmacy) to manage secondary health complications and multiple chronic conditions. Numerous healthcare providers are often involved in clinical care, increasing the risk of fragmented care, problematic polypharmacy, and conflicting health advice. These providers can play a crucial role in assisting patients with medication self-management to improve medication adherence. Design: A qualitative study involving telephone interviews, following a semi-structured guide that explored healthcare providers' conceptualization of factors impacting medication adherence for persons with SCI/D. The interviews were transcribed and analyzed descriptively and interpretively using a constant comparative process with the assistance of data display matrices. Analysis was guided by an ecological model of medication adherence. Setting and participants: Thirty-two healthcare providers from Canada, with varying clinical expertise. Intervention: Not Applicable. Outcome measures: Not Applicable. Results: Providers identified several factors that impact medication adherence for persons with SCI/D, which were grouped into micro (medication and patient-related), meso- (provider-related) and macro- (health system-related) factors. Medication-related factors included side effects, effectiveness, safety, and regimen complexity. Patient-specific factors included medication knowledge, preferences/expectations/goals, severity and type of injury, cognitive function/mental health, time since injury, and caregiver support. Provider-related factors included knowledge/confidence and trust. Health system-related factors included access to healthcare and access to medications. While providers were able to identify several factors influencing medication adherence, micro-level factors were the most frequently discussed. Conclusion: Findings from this study indicate that strategies to optimize medication adherence for persons with SCI/D should be multi-faceted.

A systematic review examining whether community-based self-management programs for older adults with chronic conditions actively engage participants and teach them patient-oriented self-management strategies.

OBJECTIVE: To identify whether community-based Self-Management Programs (SMPs) actively engaged, or taught, individuals patient-oriented strategies; and whether having these attributes led to significant differences in outcomes. METHODS: This systematic review included randomized controlled trials (RCTs)and cluster RCTs reporting on community-based SMPs with a group component for older adults with chronic conditions. The ways SMPS actively engaged participants and whether they taught patient-oriented strategies were analyzed. All study outcomes were reported. RESULTS: The 31 included studies demonstrated community-based SMP programs actively engaged participants and provided strategies to improve health behaviour or care of their condition. Few included strategies to help manage the impact of conditions on their everyday lives. Seventy-nine percent of studies reported significant differences; variations in sample sizes and outcomes made it difficult to conclude whether having these attributes led to significant differences. CONCLUSION: SMPs are not supporting older adults to use strategies to address the impact of conditions on their everyday lives, addressing the needs of older adults with multiple conditions, nor assessing outcomes that align with the strategies taught. PRACTICE IMPLICATIONS: Health-care providers delivering SMPs to older adults need to tailor programs to the needs of older adults and assess whether participants are using strategies being proposed.

Reflections of patients and therapists on a multidisciplinary rehabilitation programme for persons with brachial plexus injuries.

PURPOSE: There is lack of knowledge, evidence, and guidelines for rehabilitation interventions for persons with neuralgic amyotrophy (NA) or brachial plexus pathology. A first pilot study, evaluating the effect of an integrated rehabilitation programme, showed improvements in activity and participation levels. AIM: To gain insight, from the perspective of patients and therapists, into the critical ingredients of the programme, that contributed to improvements in activity and participation. MATERIALS AND METHODS: A qualitative study using semi-structured interviews with eight patients and five therapists (three occupational therapists and two physical therapists). Participants were asked to identify and describe factors regarding the rehabilitation that they perceived as positive and aspects of the programme that could be improved. Data were analysed using a constant comparative approach. RESULTS: Patients reported (1) Time to diagnose: "Finally I'm in the right place;" (2) Awareness: "They gave me a mirror;" (3) Partnership: "There was real contact with the therapists; we made decisions together;" (4) Close collaboration: "Overlapping scopes of practice; doing the same from a different perspective;" and finally (5) Self-management: "Now I can do it myself." Therapists reported (1) "Patients knowledge and understanding is critical to success;" (2) "Activate problem solving and decision making;" (3) "Personalize your therapy; it's more than just giving exercises and information;" (4) "Constant consultation within the team; consistency in messages and approach;" and (5)" Ultimately the patient is in charge." CONCLUSIONS: The critical ingredients, correspond well with each other and include a person-centred approach, education, support in problem solving and decision making and an integrated team approach. These ingredients provided the patients with confidence to take responsibility to manage their everyday lives, the ultimate goal of the programme. Implications for rehabilitation Both patients and therapists believe that the ability to self-manage and take control should be the outcome of high quality integrated rehabilitation programmes for patients with neuralgic amyotrophy and/or other brachial plexus injuries. A person-centred, collaborative, and integrated team approach, among all members of the team, are critical components of care delivery in personalised interventions. Critical programme ingredients are knowledge and education of both the patient and therapists; partnership between patient-therapist and within the team; patient activation and self-reflection; and personalised care. Patients recommend more options for personalisation of the intensity and duration of rehabilitation, the possibility to consult a psychologist and peer support within a group setting.

The Taxonomy of Everyday Self-management Strategies (TEDSS): A framework derived from the literature and refined using empirical data.

OBJECTIVE: To extend our understanding of self-management by using original data and a recent concept analysis to propose a unifying framework for self-management strategies. METHODS: Longitudinal interview data with 117 people with neurological conditions were used to test a preliminary framework derived from the literature. Statements from the interviews were sorted according to the predefined categories of the preliminary framework to investigate the fit between the framework and the qualitative data. Data on frequencies of strategies complemented the qualitative analysis. RESULTS: The Taxonomy of Every Day Self-management Strategies (TEDSS) Framework includes five Goal-oriented Domains (Internal, Social Interaction, Activities, Health Behaviour and Disease Controlling), and two additional Support-oriented Domains (Process and Resource). The Support-oriented Domain strategies (such as information seeking and health navigation) are not, in and of themselves, goal focused. Instead, they underlie and support the Goal-oriented Domain strategies. Together, the seven domains create a comprehensive and unified framework for understanding how people with neurological conditions self-manage all aspects of everyday life. CONCLUSIONS: The resulting TEDSS Framework provides a taxonomy that has potential to resolve conceptual confusion within the field of self-management science. PRACTICE IMPLICATIONS: The TEDSS Framework may help to guide health service delivery and research.

The structural and convergent validity of three commonly used measures of self-management in persons with neurological conditions.

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.

How adults with cardiac conditions in Singapore understand the Patient Activation Measure (PAM-13) items: a cognitive interviewing study.

PURPOSE: Validation studies of the PAM-13 have found differences in scale performance, suggesting that health beliefs embedded in different cultures and/or self-management needs of different client groups influence how people respond to the items. The purpose of this study was to examine how adults with cardiac conditions in Singapore interpreted and responded to the PAM-13, to investigate possible reasons for differences in responses and to propose solutions to overcome them. METHODS: We conducted retrospective cognitive interviews with 13 participants in an out-patient heart center. Interviews were transcribed and analyzed based on the framework approach to qualitative analysis. The four stages from Tourangeau's cognitive model were used as a framework to index the data from each item. RESULTS: There was variation in comprehension of questions leading to variation in responses. Comprehension issues were due to terms perceived by participants to be vague and the use of English terms uncommon in Singapore. Cultural influences impacted decision processes and problems with response processes of the self-rating Likert scale surfaced. CONCLUSIONS: This study reinforces the need to culturally adapt the tool, even when language translation is not necessary. Providing Likert scales with a larger number of may widen the relevance of PAM-13 in Singapore. Implications for rehabilitation Need to culturally adapt assessment tool, even when language translation is not necessary. Consider using Likert scales with a larger number of categories when using in Asian countries such as Singapore. Caution must be taken when using PAM-13 levels to decide interventions for each individual.

What we know about the purpose, theoretical foundation, scope and dimensionality of existing self-management measurement tools: A scoping review.

OBJECTIVES: To identify self-report, self-management measures for adults with chronic conditions, and describe their purpose, theoretical foundation, dimensionality (multi versus uni), and scope (generic versus condition specific). METHODS: A search of four databases (8479 articles) resulted in a scoping review of 28 self-management measures. RESULTS: Although authors identified tools as measures of self-management, wide variation in constructs measured, purpose, and theoretical foundations existed. Subscales on 13 multidimensional tools collectively measure domains of self-management relevant to clients, however no one tool's subscales cover all domains. CONCLUSIONS: Viewing self-management as a complex, multidimensional whole, demonstrated that existing measures assess different, related aspects of self-management. Activities and social roles, though important to patients, are rarely measured. Measures with capacity to quantify and distinguish aspects of self-management may promote tailored patient care. PRACTICE IMPLICATIONS: In selecting tools for research or assessment, the reason for development, definitions, and theories underpinning the measure should be scrutinized. Our ability to measure self-management must be rigorously mapped to provide comprehensive and system-wide care for clients with chronic conditions. Viewing self-management as a complex whole will help practitioners to understand the patient perspective and their contribution in supporting each individual patient.

Outcomes and impact of community-based rehabilitation programmes in Chinese communities.

PURPOSE: To identify the most common and most valued outcomes of community-based rehabilitation (CBR) in Chinese communities and to map these to the CBR evaluation framework. METHOD: A multiple, embedded case study design was used. Four CBR programmes in China met the criteria for inclusion and participated. Data collection, via participant "story telling", followed the procedures of the most significant change technique (MSC) over a period for five months. Content analysis with thematic coding was used to detect the common significant changes described in "top-rated" stories and in the entire pool of stories. Meta-analysis using the CBR framework was carried out to enrich the understanding of programme outcomes. RESULTS: A total of 101 stories were collected in the two rounds of story collection from the four programmes. Aggregated results demonstrated that, across all programmes, 78.21% of stories focused on changes in people with disabilities, 9.9% described aspects of programme development, 8.91% reported on outcomes related to CBR workers, and only 2.97% were focused on advocacy. When mapped against the elements of the CBR framework the MSCs among these four programmes were (1) psychosocial changes, (2) increased family participation and (3) improved physical functioning. CONCLUSIONS: CBR practice in Chinese communities remains orientated towards an approach of functional rehabilitation rather than community-based inclusive development. Implications for rehabilitation Community-based rehabilitation is a strategy for community-based inclusive development. Commonly reported significant outcomes of community-based rehabilitation programmes in China focus on changes in psychosocial and physical status of people with disabilities and family participation. Community-based rehabilitation in China continues to focus on traditional rehabilitation. New efforts and directions are needed to also include goals of equity and community inclusion. Further efforts to promote the use of CBR guideline with the goal of facilitating inclusion and equal participation are strongly recommended.