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Purpose/Objective: Individuals with spinal cord injuries and disorders (SCI/D) are at increased risk for experiencing loneliness and social isolation. The aim is to describe facilitators identified by individuals living with SCI/D to alleviate loneliness and perceived social isolation. Research Method/Design: Descriptive qualitative design using in-depth interviews with veterans with SCI/D (n = 23). Descriptive statistics was used to calculate demographic and injury characteristics. Audio-recorded and transcribed verbatim transcripts were coded and analyzed using Braun and Clarke's (2006) six thematic analysis phases. Results: Participants were male (70%), white (78%), and not currently married (35%), with an average age of 66 years (42–88). Participants had paraplegia (61%), with traumatic etiology (65%) and were injured 14 years (1–45) on average. Eight themes were identified by participants living with SCI/D that described facilitators to alleviate loneliness and perceived social isolation. (a) Engage in/pursue interests; (b) Interact with/spend time with others; (c) Embrace acceptance; (d) Take part in reciprocity; (e) Find a purpose/accomplish goals; (f) Get out of residence, get outside; (g) Connect with SCI/D community/SCI/D peers; and (h) Seek help from (mental) healthcare professionals. Conclusions/Implications: Individuals with SCI/D identified facilitators to alleviate loneliness that encompasses changes in ways of thinking, actions to expand participation in life, and efforts focused on involving others. Findings can be used to guide healthcare delivery and develop interventions to target feelings of loneliness and social isolation in persons with SCI/D, which may be particularly impactful if they involve reciprocal interactions with peers with SCI/D. Impact and Implications: Due to the many consequential health impacts, loneliness and social isolation have been deemed an epidemic. Individuals with spinal cord injuries and disorders (SCI/D) are at increased risk for feelings of loneliness and social isolation because of barriers they face after injury, such as mobility issues and smaller social networks. Efforts are needed to help individuals with SCI/D manage loneliness/isolation; the current study findings offer actionable facilitators that can be used in rehabilitation settings. Individuals with lived experiences provide a rich source for understanding multiple strategies that can be used to address psychosocial outcomes. Individuals with SCI/D offered personal insights on ways to alleviate feelings of loneliness and social isolation, which are directly applicable to guide patient-centered treatment planning. Lack of published interventions to reduce loneliness/isolation among persons with SCI/D makes these findings an invaluable source of information to develop novel interventions. [ABSTRACT FROM AUTHOR]

We sought to describe factors influencing reduced rates of obesity screening for patients with spinal cord injury (SCI) in the United States Veterans Health Administration (VA) and to foster potential solutions. Semi-structured interviews with healthcare providers and patients with SCI who were recruited nationally from diverse VAs. We performed rapid qualitative analysis using content analysis of interview data. There were 36 providers and 37 patients. We identified provider, patient, and system level barriers to obesity screening for individuals with SCI. Overarching barriers involved provider and patient perceptions that obesity screening is a low priority compared to other health conditions, and body mass index is of low utility. Other obesity screening barriers were related to measuring weight (i.e., insufficient equipment, unknown wheelchair weight, staffing shortages, measurement errors, reduced access to annual screening, insufficient time, patient preference not to be weighed) and measuring height (i.e., insufficient guidance and equipment to this population, measurement errors). Barriers to obesity screenings exist for patients with SCI receiving care in VA. Healthcare provider and patient interviews suggest possible solutions, including standardizing height and weight measurement processes, ensuring equipment availability in clinics, clarifying guidelines, and offering support to providers and patients. Individuals with spinal cord injury (SCI) have higher rates of obesity, but are often overlooked for annual obesity screening, even in clinic settings designed to care for individuals with SCI. Results may help tailor guidelines/education for healthcare and rehabilitation providers offering them guidance for improving obesity screening for individuals with SCI by standardizing weight and height measurement and documentation. To facilitate this, findings highlight the need for resources, such as ensuring clinics have necessary equipment, and increasing patient access to support and equipment. Improving the provision of obesity screening for individuals with SCI is necessary to improve health outcomes and patient satisfaction with care. [ABSTRACT FROM AUTHOR]

Importance: Informal caregivers have valuable insights that occupational therapists can use to prevent and manage problems that may arise in people with spinal cord injury (SCI) because of a lack of physical activity and poor nutrition. Objective: To assess caregiver-identified facilitators of weight management in people with SCI. Design: Descriptive qualitative design using semistructured interviews and thematic analysis. Setting: Regional SCI Care Model System and Veterans Health Administration. Participants: Informal caregivers (n = 24) of people with SCI. Outcomes and Measures: Facilitators of successful weight management in care recipients with SCI. Results: Four themes were identified as weight management facilitators: healthy eating (subthemes: food content, self-control, self-management, and healthy preinjury lifestyle), exercise and therapy (subthemes: occupational and physical therapy, receiving assistance, and resources for exercise), accessibility, and leisure activity or activities of daily living, the latter described as a source of activity (because of required energy expenditure) to facilitate weight management for people with more severe injuries. Conclusions and Relevance: These findings can inform the development of successful weight management plans by occupational therapists by incorporating feedback from informal caregivers. Because caregivers are involved in many of the facilitators identified, occupational therapists should communicate with the dyad about sourcing accessible places to increase physical activity and assessing in-person assistance and assistive technology needs to promote healthy eating and physical activity. Occupational therapists can use informal caregiver–identified facilitators of weight management to help prevent and manage problems for people with SCI secondary to limited activity and poor nutrition. What This Article Adds: Occupational therapy practitioners provide therapeutic intervention to people with SCI; this includes attention to weight management from the time of initial injury throughout their lives. This article is novel in the presentation of informal caregivers' perceptions about successful facilitators of weight management among people with SCI, which is important because caregivers are intimately involved in the daily activities of people with SCI and can be a liaison for occupational therapists and other health care providers about ways to facilitate healthy eating and physical activity. This article is novel in the presentation of informal caregivers' perceptions about successful facilitators of weight management among people with spinal cord injury (SCI), which is important because caregivers are intimately involved in the daily activities of people with SCI and can be a liaison for occupational therapists and other health care providers about ways to facilitate healthy eating and physical activity. [ABSTRACT FROM AUTHOR]

Purpose/Objective: To explore the impact of the COVID-19 pandemic as experienced and reported by individuals living with a spinal cord injury (SCI). Research Method/Design: Descriptive qualitative design using in-depth semistructured interviews with individuals with SCI (n = 33) followed by thematic analysis. Results: Three main themes described impacts of the COVID-19 pandemic. (a) Impact on health care use; subthemes elaborated that this was attributable to in-person health care facility restrictions or individual decisions to delay care. Individuals with SCI experienced lapses in primary and SCI-specialty care, rehabilitation/therapy services, and home care, but some made use of telehealth services. (b) Impact on weight and/or weight management lifestyle behaviors; subthemes discussed that engagement in physical activity declined because of fitness center closures, recreational activity cancellations, and safety precautions limiting community-based and outdoor activities. The pandemic disrupted participants' independence in purchasing and making preferred food selections which impacted healthy eating. Participants ate due to boredom, at nonmealtimes, and consumed unhealthy foods during the pandemic. (c) Impact on psychosocial factors; included subthemes noting reduced social interactions, social participation, and ability to pursue pastimes with family, friends, and groups they belonged to. The pandemic also triggered emotional reactions such as worry, fear, doubt, demotivation, and feelings of social isolation. Conclusions: Our findings highlight the magnitude of consequences faced by individuals with SCI when restrictions to health care, healthy lifestyle endeavors, and social participation occurred during the COVID-19 pandemic. Findings may inform SCI health care providers on what is needed in response to future public health or natural disaster crises. Impact and Implications: As one of few studies to use qualitative interviews with in-depth thematic analysis, this article offers a novel method of examining the impact of the COVID-19 pandemic from the perspectives of individuals with SCI. Individuals with SCI offered insights on ways in which the pandemic disrupted their receipt of routine health care (including home care and rehabilitation/therapy), engagement in healthy eating and physical activity, and social participation. Other research indicates that the general population faced similar barriers; however, owing to several biopsychosocial realities related to function and disability, the obstacles appeared to be intensified for persons with SCI, for example reliance on home health caregivers for regular range of motion exercises, and perceptions of increased risk of virus exposure due to immunocompromised bodily systems in persons with SCI. Negative impacts from obstacles to receiving health care, engaging in healthy weight management lifestyle behaviors, and social participation may have both short- and long-term effects on increased risk for and management of chronic disease, particularly cardiometabolic conditions and SCI-related secondary conditions, as well as poor social health and emotional well-being. [ABSTRACT FROM AUTHOR]

To understand how informal caregivers are affected by weight and weight management of care recipients with SCI. In-depth qualitative interviews were conducted with 24 informal caregivers of community-dwelling Veterans and civilians with SCI. Thematic analysis was conducted. Three themes described how the care recipient's weight management efforts impacted the caregiver, including: (1) motivation and involvement in weight management efforts for themselves, (2) emotional well-being (positive and negative aspects), and (3) physical tasks (both ease and burden). Caregivers may experience emotional and/or physical burden by taking on extra caregiving tasks to help with care recipient's weight management. Caregivers also may experience positive impacts from the care recipient's weight management efforts, regardless of who drove the efforts, including improvement in their own motivation and involvement in weight management, enhanced emotional well-being (happiness for and with the care-recipient), and making physical caregiving tasks easier. Rehabilitation providers can use these findings to educate dyads about potential impacts of weight management efforts for the care recipient, specifying areas that may cause burden but emphasizing the potential benefits for both recipient and caregiver. Integrating this education into rehabilitation practice may reduce overweight-related problems with function and declines in disability among dyads. Informal caregivers experience both positive and negative consequences with regard to weight management for individuals with SCI. Helping their loved one with weight management can facilitate informal caregivers' involvement in their own weight management activities. Findings may offer guidance to healthcare and rehabilitation providers as they incorporate weight management into education programs for informal caregivers of persons with SCI. Integrating this education into rehabilitation practice may reduce or delay overweight-related problems with function and declines in disability among dyads. [ABSTRACT FROM AUTHOR]

Health providers often focus on secondary conditions and spend less time prioritising overweight/obesity care. Informal caregivers are well positioned to facilitate health‐promoting behaviours of healthy eating and physical activity among community‐dwelling care recipients with spinal cord injury (SCI) for prevention and management of overweight/obesity. Literature has typically focused on caregiver adjustment post‐injury and burden related to their roles in secondary condition care. The novel objective of this study was to describe informal caregivers' perspectives of their roles in facilitating health‐promoting weight management behaviours, healthy eating and physical activity, for care recipients with SCI. This was a qualitative study that used semi‐structured interviews with informal caregivers for data collection in 2019. Braun & Clarke's established thematic phases were used for analysis. Participants included informal caregivers of individuals with SCI living in the community (n = 24). Caregivers identified eight themes to describe their role in facilitating weight management for care recipients. Themes included: (1) meal planning/shopping, (2) meal preparation/cooking, (3) using portion control, (4) serving/feeding, (5) helping the care recipient with physical activity and/or leisure activities, (6) mutually participating in weight management activities, (7) providing motivation and encouragement and (8) being an information liaison. In summary, informal caregivers have an intimate understanding of care recipients' needs and have insights on obstacles and enablers to health‐promoting behaviours, making their involvement in facilitating weight management in individuals with SCI vital. Caregivers self‐identified several significant roles for promoting weight management. This is especially valuable for conditions such as overweight/obesity for which prevention and treatment involve health‐promoting behaviours that need consistent attention in the community setting. It is important to ensure that informal caregivers and care recipients have the information required in order to facilitate healthy eating and physical activity in persons with SCI and have opportunities for mutual dyadic participation when both partners are interested. [ABSTRACT FROM AUTHOR]

Objective: To explore health care professionals' perceptions of ideal strategies for providers to use in care provision to help individuals with spinal cord injuries (SCI) deal with injury-related grief and loss. Method: This study used a descriptive qualitative design using semistructured interviews with 15 SCI health providers and thematic analysis. Results: The sample included interprofessional health providers who provided SCI care for an average of 10.3 years at six nationally distributed facilities. Participants identified eight themes around strategies that can be used by providers to help individuals with SCI experiencing grief and loss. Strategies/themes included those that are relational, such as (Theme 1) listening and engaging in open discussions, (Theme 2) being empathetic and fostering trust, (Theme 3) normalizing the experience of grief for the individual, and (Theme 4) focusing on the individual with SCI as a whole. Task-oriented themes included providing regular screening/assessments for grief (Theme 5), coordinated care to the individual (Theme 6), support services (Theme 7), and education to help individuals with SCI understand the grief process (Theme 8). Conclusions: Providers identified strategies to facilitate holistic patient-centered grief care that included open communication, empathy, trust, and normalizing the grief experience, where appropriate. Providers believed that regular screenings for feelings of grief and loss are necessary to know where individuals with SCI are at in the grief process and what they need. Ideal grief care would benefit from coordinated care, support services, and patient education. These findings offer steps to guide health provider's approach to addressing grief and loss due to injury among individuals with SCI. [ABSTRACT FROM AUTHOR]

Background Patient-centred care is now ubiquitous in health services research, and healthcare systems are moving ahead with patient-centred care implementation. Yet, little is known about how healthcare employees, charged with implementing patient-centred care, conceptualize what they are implementing. Objective To examine how hospital employees conceptualize patient-centred care. Research Design We conducted qualitative interviews about patient-centred care during site four visits, from January to April 2013. Subjects We interviewed 107 employees, including leadership, middle managers, front line providers and staff at four US Veteran Health Administration ( VHA) medical centres leading VHA's patient-centred care transformation. Measures Data were analysed using grounded thematic analysis. Findings were then mapped to established patient-centred care constructs identified in the literature: taking a biopsychosocial perspective; viewing the patient-as-person; sharing power and responsibility; establishing a therapeutic alliance; and viewing the doctor-as-person. Results We identified three distinct conceptualizations: (i) those that were well aligned with established patient-centred care constructs surrounding the clinical encounter; (ii) others that extended conceptualizations of patient-centred care into the organizational culture, encompassing the entire patient-experience; and (iii) still others that were poorly aligned with patient-centred care constructs, reflecting more traditional patient care practices. Conclusions Patient-centred care ideals have permeated into healthcare systems. Additionally, patient-centred care has been expanded to encompass a cultural shift in care delivery, beginning with patients' experiences entering a facility. However, some healthcare employees, namely leadership, see patient-centred care so broadly, it encompasses on-going hospital initiatives, while others consider patient-centred care as inherent to specific positions. These latter conceptualizations risk undermining patient-centred care implementation by limiting transformational initiatives to specific providers or simply repackaging existing programmes. [ABSTRACT FROM AUTHOR]

Background: Patient-reported experience measures (PREMs) are useful for assessing health care quality and safety and patients' perceptions of health care.Objective: We aimed to assess the relationship between PREMS [e.g., measures of patient-centered care (PCC)] and health care quality metrics.Design: We conducted a national survey via mail. Survey data were supplemented with US Department of Veteran Affairs (VA) administrative data.Participants: Veteran (n = 5512) VA health care users participated in the study.Main Measures: PCC measures included: patient activation; shared decision-making (SDM); empathy and holistic care; chronic illness care; perceptions of participation, respect for choices, and support; and overall health care experience. Health care quality measures included: preventive care screening receipt; chronic condition management (diabetes, hypertension); and health care utilization (hospitalizations, emergency room (ER) visits). Analyses included: bivariate comparisons of PCC measures by health care quality measures; and multivariate linear regression to identify variables associated with attaining multiple positive health care quality indicators (when controlling for potential confounders).Key Results: PREMs assessing factors relating to patient-provider communication (e.g., empathic provider care, shared decision-making) are mainly related to clinical indicators representing good chronic condition management, while those relating more broadly to health care in general (e.g., patient activation, chronic illness care) are mainly related to measures of appropriate health care use (e.g., preventive care screening receipt; potentially avoidable hospitalizations; unscheduled care, such as ER visits). When controlling for potential confounders, higher perceptions of the decision-making effectiveness component of SDM (β = 0.004, p = 0.03) and empathy and holistic care (β = 0.01, p = 0.02) showed a weak but positive relationship with attaining a greater number of positive health care quality indicators, while a weak but negative relationship emerged for perceptions of participation, respect for choices, and support (β = -0.003, p = 0.03) and overall VA experiences (β = -0.10, p = 0.04).Conclusions: PREMs that measure PCC offer rich data about health care quality while engaging patients, and considering patient experiences and preferences, in performance assessment. PREMs may be used to supplement existing performance metrics. [ABSTRACT FROM AUTHOR]

Aim To examine associations between perceptions of evidence (research evidence, clinical expertise, patient preferences) and outcomes of a nationwide programme to implement H1N1 influenza prevention guidelines. Background Healthcare workers do not consistently adhere to recommended infection control practices and this may be associated with their perceptions of evidence sources. Design Cross-sectional mailed survey. Method A survey of healthcare workers was administered in August 2010 after implementation of H1N1 prevention guidelines. Outcomes of interest were ratings of adherence to H1N1 prevention guidelines. Findings Respondents with complete data ( N = 283) were included in analyses. Facility-level adherence to guidelines was associated with opinions of clinical experts. Healthcare workers who rated clinical expertise as aligning with recommendations also rated their facilities as being more adherent to guidelines. Perceptions of research evidence and patient preferences were not associated with facility adherence. Personal adherence was not associated with perceptions of evidence, except among those healthcare workers who rated both clinical experts and patients as unsupportive of guidelines; these practitioners were less likely to adhere to recommended personal hygiene practices. Conclusion Efforts to implement guidelines might be most effective when capitalizing on the influence of clinical experts. To better explain variability in guideline adherence, inclusion of a broader array of variables is recommended for future studies. [ABSTRACT FROM AUTHOR]

Objectives: The need for informal caregiving has been rapidly increasing across several countries. Spouses comprise a sizeable segment of informal caregivers and typically represent an older cohort with special health concerns. The objective of this review was to examine psychological health outcomes in older adult spouses caring for older adults.Methods: Literature review/synthesis (1999—2009).Results: Compared to demographically matched married non-caregiving controls, older adult spousal caregivers experienced more cognitive functioning difficulties, strain, distress, stress, loneliness, depression, anxiety and poorer mental health. Caregivers of spouses with cognitive impairments, quite often wives, were especially affected by poor psychological health, as were caregivers who were new to the caregiving role and those who rated caregiving as stressful. Psychological health improved when the caregiving role ceased.Discussion: Several poor psychological outcomes were found in older adults caring for their spouses; the magnitude of which varied and were more pronounced under certain circumstances. To preserve caregiver health, maintain recipient health and care quality and avoid exceeding system of care capacity, efforts are needed to provide support to older adult spousal caregivers and recipients. Couples may need to be assessed as a unit, taking gender and cultural considerations into account, and additional resources may be required. [ABSTRACT FROM PUBLISHER]

Background: Healthcare organizations increasingly are focused on providing care which is patient-centered rather than disease-focused. Yet little is known about how best to transform the culture of care in these organizations. We sought to understand key organizational factors for implementing patient-centered care cultural transformation through an examination of efforts in the US Department of Veterans Affairs.Methods: We conducted multi-day site visits at four US Department of Veterans Affairs medical centers designated as leaders in providing patient-centered care. We conducted qualitative semi-structured interviews with 108 employees (22 senior leaders, 42 middle managers, 37 front-line providers and 7 staff). Transcripts of audio recordings were analyzed using a priori codes based on the Consolidated Framework for Implementation Research. We used constant comparison analysis to synthesize codes into meaningful domains.Results: Sites described actions taken to foster patient-centered care in seven domains: 1) leadership; 2) patient and family engagement; 3) staff engagement; 4) focus on innovations; 5) alignment of staff roles and priorities; 6) organizational structures and processes; 7) environment of care. Within each domain, we identified multi-faceted strategies for implementing change. These included efforts by all levels of organizational leaders who modeled patient-centered care in their interactions and fostered willingness to try novel approaches to care amongst staff. Alignment and integration of patient centered care within the organization, particularly surrounding roles, priorities and bureaucratic rules, remained major challenges.Conclusions: Transforming healthcare systems to focus on patient-centered care and better serve the "whole" patient is a complex endeavor. Efforts to transform healthcare culture require robust, multi-pronged efforts at all levels of the organization; leadership is only the beginning. Challenges remain for incorporating patient-centered approaches in the context of competing priorities and regulations. Through actions within each of the domains, organizations may begin to truly transform to patient-driven care. [ABSTRACT FROM AUTHOR]

Objective: To examine preferences for relational continuity and rapid accessibility for telephone care. Methods: A mixed-methods sequential explanatory design was utilized. Structured telephone interviews were conducted with 448 Veterans receiving primary care from Veterans Affairs facilities, who rated the importance of relational continuity and rapid accessibility. Seventeen focus groups were conducted with 123 Veterans to examine preferences for continuity versus accessibility and factors affecting these preferences. Results: Higher proportions of interview patients rated talking with a nurse from their own primary care team (69%) and talking with a nurse with whom they have previous primary care contact (60%) as very important, compared with talking to any nurse as soon as possible (53%) and receiving advice immediately (50%). Focus group participants preferred a familiar provider within 24 hours over immediate contact with an unfamiliar provider, particularly for routine needs. Rapid accessibility was more frequently preferred for urgent questions/concerns. Preference for relational continuity was mitigated by patient age, and access to electronic medical records in larger, but not smaller, facilities. Conclusions: Health care systems supplementing in-person care with telephone care need to ensure that this care aligns with patient preferences and provide opportunities for both relational continuity and rapid accessibility where possible. [ABSTRACT FROM AUTHOR]