ABSTRACT
The Aphasia Communication Outcome Measure (ACOM) is a patient-reported measure of communicative functioning developed for persons with stroke-induced aphasia. It was motivated by the desire to include the perspective of persons with aphasia in the measurement of treatment outcomes and to apply newly accessible psychometric tools to improve the quality and usefulness of available outcome measures for aphasia. The ACOM was developed within an item response theory framework, and the validity of the score estimates it provides is supported by evidence based on its content, internal structure, relationships with other variables, stability over time, and responsiveness to treatment. This article summarizes the background and motivation for the ACOM, the steps in its initial development, evidence supporting its validity as a measure of patient-reported communication functioning, and current recommendations for interpreting change scores.
Subject(s)
Aphasia , Stroke , Aphasia/diagnosis , Aphasia/etiology , Aphasia/therapy , Communication , Humans , Motivation , Psychometrics , Reproducibility of Results , Stroke/complicationsABSTRACT
Purpose Semantic feature analysis (SFA) is a naming treatment found to improve naming performance for both treated and semantically related untreated words in aphasia. A crucial treatment component is the requirement that patients generate semantic features of treated items. This article examined the role feature generation plays in treatment response to SFA in several ways: It attempted to replicate preliminary findings from Gravier et al. (2018), which found feature generation predicted treatment-related gains for both trained and untrained words. It examined whether feature diversity or the number of features generated in specific categories differentially affected SFA treatment outcomes. Method SFA was administered to 44 participants with chronic aphasia daily for 4 weeks. Treatment was administered to multiple lists sequentially in a multiple-baseline design. Participant-generated features were captured during treatment and coded in terms of feature category, total average number of features generated per trial, and total number of unique features generated per item. Item-level naming accuracy was analyzed using logistic mixed-effects regression models. Results Producing more participant-generated features was found to improve treatment response for trained but not untrained items in SFA, in contrast to Gravier et al. (2018). There was no effect of participant-generated feature diversity or any differential effect of feature category on SFA treatment outcomes. Conclusions Patient-generated features remain a key predictor of direct training effects and overall treatment response in SFA. Aphasia severity was also a significant predictor of treatment outcomes. Future work should focus on identifying potential nonresponders to therapy and explore treatment modifications to improve treatment outcomes for these individuals. Supplemental Material https://doi.org/10.23641/asha.12462596.
Subject(s)
Aphasia , Semantics , Aphasia/diagnosis , Aphasia/therapy , Generalization, Psychological , Humans , Language Therapy , Treatment OutcomeABSTRACT
In April, 2019, the Alzheimer's Association Dementia Care Provider Roundtable convened to discuss common challenges faced when implementing person-centered, non-pharmacological practices in long-term care and other settings that provide care and programs for persons living with dementia, and to develop relevant, specific guidance from the perspective of administrative leaders from 23 long-term and community-based care provider organizations (representing home, community-based, and residential care). Guidance related to 5 practice areas emerged from the facilitated discussion: having a foundational person-centered culture, conceptualizing behaviors as expressions and focusing on behavioral support, identifying antecedents and placing person-centeredness before protocols, modifying training to promote person-centered culture, and valuing implementation flexibility. In developing the practice guidance, a related list of priority areas for research and policy were also identified.
Subject(s)
Alzheimer Disease , Dementia , Alzheimer Disease/therapy , Dementia/therapy , Humans , Long-Term Care , Patient-Centered Care , Self CareABSTRACT
Purpose The aim of this study was to examine the effects of dose frequency, an aspect of treatment intensity, on articulation outcomes of sound production treatment (SPT). Method Twelve speakers with apraxia of speech and aphasia received SPT administered with an intense dose frequency and a nonintense/traditional dose frequency (SPT-T). Each participant received both treatment intensities in the context of multiple baseline designs across behaviors. SPT-Intense was provided for 3 hourly sessions per day/3 days per week; and SPT-T for 1 hour-long session per day/3 days per week. Twenty-seven treatment sessions were completed with each phase of treatment. Articulation accuracy was measured in probes of production of treated and untreated words. Results All participants achieved improved articulation of treated words with both intensities; there were no notable differences in magnitude of improvement associated with dose frequency. Positive response generalization to untrained words was found in 21 of 24 treatment applications; the cases of negligible response generalization occurred with SPT-T words. Conclusions Dose frequency (and corresponding total intervention duration) did not appear to impact treatment response for treated items. Disparate response generalization findings for 3 participants in the current study may relate to participant characteristics such as apraxia of speech severity and/or stimuli factors.
Subject(s)
Aphasia, Broca/therapy , Speech Production Measurement/methods , Speech Therapy/methods , Adult , Aged , Aged, 80 and over , Aphasia, Broca/diagnosis , Aphasia, Broca/etiology , Female , Humans , Male , Middle Aged , Reproducibility of Results , Stroke/complications , Treatment OutcomeABSTRACT
Informed by theory from environmental gerontology, this study investigates how assisted living residents who are approaching end of life navigate and experience space. Since its development, environmental gerontology has moved beyond the concept of person-environment fit to encompass aspects of place attachment and place integration, processes by which inhabited impersonal space becomes a place of individual personal meaning and this person-place relationship evolves with changing needs. Our study is a secondary data analysis of in-depth interviews completed with the first 15 residents (mean age 88, range 65-103; 8 white and 7 black) recruited from four diverse assisted living communities in metropolitan Atlanta. Using interpretative phenomenological analysis, we identify five overarching themes within and across assisted living communities and their subthemes. Findings show that participants experience a neutral theme of shrinking space, negative themes of confinement and vulnerability, and positive themes of safety and intimacy. Results dovetail with other phenomenologically based environmental gerontology research from community-dwelling populations that indicate behavioral changes to accommodate aging and health decline. Findings have implications for interventions to improve place integration in AL and enhance residents' quality of life at end of life, including developing strategies to promote small meaningful journeys within context of shrinking life space.
Subject(s)
Aging/psychology , Assisted Living Facilities , Health Facility Environment , Health Services for the Aged , Terminal Care , Aged , Aged, 80 and over , Female , Humans , Interviews as Topic , Male , Quality of Life , United StatesABSTRACT
Purpose: This investigation was designed to examine the effects of treatment intensity (i.e., dose frequency) on the outcomes of Sound Production Treatment (SPT) for acquired apraxia of speech. Method: Five men with chronic apraxia of speech and aphasia received both intense SPT (3 hr per day/3 days per week) and nonintense/traditional SPT (SPT-T; 1 hr per day/3 days per week) in the context of single-case experimental designs. Each treatment was applied separately to a designated set of experimental words with 1 treatment applied at a time. Twenty-seven treatment sessions were conducted with each phase of treatment. Accuracy of articulation of target sounds within treated and untreated experimental words was measured during the course of the investigation. Results: All participants demonstrated improved articulation with both treatment intensities. Better maintenance of gains for treated items was found with SPT-T for 2 participants as measured at an 8-week posttreatment retention probe. Superior maintenance of increased accuracy of production of untreated items was also observed with SPT-T for all participants. Conclusion: A less intense (distributed) application of SPT facilitated better maintenance of improved articulatory accuracy for untreated items, and in some cases treated items, than intense SPT. Supplemental Materials: https://doi.org/10.23641/asha.5734053.
Subject(s)
Apraxias/therapy , Speech Acoustics , Speech Therapy/methods , Voice Quality , Voice Training , Acoustic Stimulation , Adult , Apraxias/diagnosis , Apraxias/physiopathology , Apraxias/psychology , Humans , Male , Middle Aged , Recovery of Function , Speech Intelligibility , Speech Production Measurement , Time Factors , Treatment OutcomeABSTRACT
Purpose: This study investigated the predictive value of practice-related variables-number of treatment trials delivered, total treatment time, average number of trials per hour, and average number of participant-generated features per trial-in response to semantic feature analysis (SFA) treatment. Method: SFA was administered to 17 participants with chronic aphasia daily for 4 weeks. Individualized treatment and semantically related probe lists were generated from items that participants were unable to name consistently during baseline testing. Treatment was administered to each list sequentially in a multiple-baseline design. Naming accuracy for treated and untreated items was obtained at study entry, exit, and 1-month follow-up. Results: Item-level naming accuracy was analyzed using logistic mixed-effect regression models. The average number of features generated per trial positively predicted naming accuracy for both treated and untreated items, at exit and follow-up. In contrast, total treatment time and average trials per hour did not significantly predict treatment response. The predictive effect of number of treatment trials on naming accuracy trended toward significance at exit, although this relationship held for treated items only. Conclusions: These results suggest that the number of patient-generated features may be more strongly associated with SFA-related naming outcomes, particularly generalization and maintenance, than other practice-related variables. Supplemental Materials: https://doi.org/10.23641/asha.5734113.
Subject(s)
Aphasia/therapy , Comprehension , Semantics , Speech-Language Pathology/methods , Adult , Aged , Aphasia/diagnosis , Aphasia/psychology , Female , Humans , Language Tests , Male , Middle Aged , Recovery of Function , Severity of Illness Index , Time Factors , Treatment OutcomeABSTRACT
Objectives: Frail and disabled individuals such as assisted living residents are embedded in "care convoys" comprised of paid and unpaid caregivers. We sought to learn how care convoys are configured and function in assisted living and understand how and why they vary and with what resident and caregiver outcomes. Method: We analyzed data from a qualitative study involving formal in-depth interviews, participant observation and informal interviewing, and record review. We prospectively studied 28 residents and 114 care convoy members drawn from four diverse assisted living communities over 2 years. Results: Care convoys involved family and friends who operated individually or shared responsibility, assisted living staff, and multiple external care workers. Residents and convoy members engaged in processes of "maneuvering together, apart, and at odds" as they negotiated the care landscape routinely and during health crises. Based on consensus levels, and the quality of collaboration and communication, we identified three main convoy types: cohesive, fragmented, and discordant. Discussion: Care convoys clearly shape care experiences and outcomes. Identifying strategies for establishing effective communication and collaboration practices and promoting convoy member consensus, particularly over time, is essential to the creation and maintenance of successful and supportive care partnerships.
Subject(s)
Assisted Living Facilities , Adult , Aged , Aged, 80 and over , Assisted Living Facilities/organization & administration , Caregivers/psychology , Communication , Female , Humans , Interviews as Topic , Male , Middle Aged , Patient Care/methods , Patient Care/psychology , Prospective StudiesABSTRACT
PURPOSE: The purpose of this study was to evaluate the ability of persons with aphasia, with and without hearing loss, to complete a commonly used open-set word recognition test that requires a verbal response. Furthermore, phonotactic probabilities and neighborhood densities of word recognition errors were assessed to explore potential underlying linguistic complexities that might differentially influence performance among groups. METHOD: Four groups of adult participants were tested: participants with no brain injury with normal hearing, participants with no brain injury with hearing loss, participants with brain injury with aphasia and normal hearing, and participants with brain injury with aphasia and hearing loss. The Northwestern University Auditory Test No. 6 (NU-6; Tillman & Carhart, 1966) was administered. Those participants who were unable to respond orally (repeating words as heard) were assessed with the Picture Identification Task (Wilson & Antablin, 1980), permitting a picture-pointing response instead. Error patterns from the NU-6 were assessed to determine whether phonotactic probability influenced performance. RESULTS: All participants with no brain injury and 72.7% of the participants with aphasia (24 out of 33) completed the NU-6. Furthermore, all participants who were unable to complete the NU-6 were able to complete the Picture Identification Task. There were significant group differences on NU-6 performance. The 2 groups with normal hearing had significantly higher scores than the 2 groups with hearing loss, but the 2 groups with normal hearing and the 2 groups with hearing loss did not differ from one another, implying that their performance was largely determined by hearing loss rather than by brain injury or aphasia. The neighborhood density, but not phonotactic probabilities, of the participants' errors differed across groups with and without aphasia. CONCLUSIONS: Because the vast majority of the participants with aphasia examined could be tested readily using an instrument such as the NU-6, clinicians should not be reticent to use this test if patients are able to repeat single words, but routine use of alternative tests is encouraged for populations of people with brain injuries.
Subject(s)
Aphasia/diagnosis , Audiometry, Speech/methods , Speech Perception/physiology , Speech Reception Threshold Test/methods , Adult , Analysis of Variance , Audiometry, Pure-Tone , Brain Injuries/diagnosis , Cohort Studies , Female , Hearing Loss/diagnosis , Humans , Male , Middle Aged , Perceptual Masking/physiology , Reference Values , Speech Discrimination Tests/methodsABSTRACT
The purpose of this study was to examine the utility of electrocardiograms (EKGs) for low-risk, low-voltage pediatric electrical burn victims. A retrospective chart review was conducted on 86 pediatric patients who presented to the children's hospital between 2000 and 2015 after sustaining electrical burns. Variables included source and estimated voltage, extent of injuries, length of stay, high risk factors, and EKG results. High risk factors included estimated voltage > 1000 V, lightning, tetany, symptoms, loss of consciousness, or seizures. Statistical analyses were conducted. Average age was 5 years. Of those who sustained burns, 84.5% (n = 71/84) had second-degree burns ≤ 1% TBSA or less. Eleven patients had high risk factors, 12.9% (n = 11/85) and most had length of stay < 3 days (91.8%; n = 78/85). Majority sustained burns from low-voltage (< 300 V) household electrical outlets, cords, or light bulb sockets (90.4%; n = 75/83). Among patients with available EKGs, 12 had arrhythmias on initial EKG (i.e., low right atrial rhythm, t-wave inversions, sinus tachycardia, bundle branch block; 20.7%; n = 12/58). All were transient and nonfatal. The data suggest that low estimated voltage (< 300 V) electrical injuries were associated with negative EKGs; however, due to the low rate of arrhythmias, a Fisher's exact test did not show significance, P = 0.09 (P > 0.05). Preliminary data suggest that most pediatric electrical burns are due to low voltage (< 300 V) household sources. Few have high risk factors or arrhythmias that were transient and nonfatal. These data suggest that low-risk, asymptomatic, low-voltage pediatric electrical burns may not require an initial screening EKG.
Subject(s)
Arrhythmias, Cardiac/diagnosis , Arrhythmias, Cardiac/epidemiology , Burns, Electric/complications , Burns, Electric/physiopathology , Electrocardiography , Adolescent , Child , Child, Preschool , Female , Humans , Length of Stay , Male , Needs Assessment , Patient Selection , Retrospective Studies , Risk FactorsABSTRACT
In this article, we analyze the research experiences associated with a longitudinal qualitative study of residents' care networks in assisted living. Using data from researcher meetings, field notes, and memos, we critically examine our design and decision making and accompanying methodological implications. We focus on one complete wave of data collection involving 28 residents and 114 care network members in four diverse settings followed for 2 years. We identify study features that make our research innovative, but that also represent significant challenges. They include the focus and topic; settings and participants; scope and design complexity; nature, modes, frequency, and duration of data collection; and analytic approach. Each feature has methodological implications, including benefits and challenges pertaining to recruitment, retention, data collection, quality, and management, research team work, researcher roles, ethics, and dissemination. Our analysis demonstrates the value of our approach and of reflecting on and sharing methodological processes for cumulative knowledge building.
Subject(s)
Assisted Living Facilities/organization & administration , Continuity of Patient Care/organization & administration , Longitudinal Studies , Qualitative Research , Research Design , Confidentiality , Ethics, Research , Humans , Independent Living , Professional RoleABSTRACT
BACKGROUND: Neuropsychological testing is a central aspect of stroke research because it provides critical information about the cognitive-behavioral status of stroke survivors, as well as the diagnosis and treatment of stroke-related disorders. Standard neuropsychological methods rely upon face-to-face interactions between a patient and researcher, which creates geographic and logistical barriers that impede research progress and treatment advances. INTRODUCTION: To overcome these barriers, we created a flexible and integrated system for the remote acquisition of neuropsychological data (RAND). The system we developed has a secure architecture that permits collaborative videoconferencing. The system supports shared audiovisual feeds that can provide continuous virtual interaction between a participant and researcher throughout a testing session. Shared presentation and computing controls can be used to deliver auditory and visual test items adapted from standard face-to-face materials or execute computer-based assessments. Spoken and manual responses can be acquired, and the components of the session can be recorded for offline data analysis. MATERIALS AND METHODS: To evaluate its feasibility, our RAND system was used to administer a speech-language test battery to 16 stroke survivors with a variety of communication, sensory, and motor impairments. The sessions were initiated virtually without prior face-to-face instruction in the RAND technology or test battery. RESULTS: Neuropsychological data were successfully acquired from all participants, including those with limited technology experience, and those with a communication, sensory, or motor impairment. Furthermore, participants indicated a high level of satisfaction with the RAND system and the remote assessment that it permits. CONCLUSIONS: The results indicate the feasibility of using the RAND system for virtual home-based neuropsychological assessment without prior face-to-face contact between a participant and researcher. Because our RAND system architecture uses off-the-shelf technology and software, it can be duplicated without specialized expertise or equipment. In sum, our RAND system offers a readily available and promising alternative to face-to-face neuropsychological assessment in stroke research.
Subject(s)
Biomedical Research/methods , Language Disorders/diagnosis , Language Disorders/etiology , Stroke/complications , Telemedicine/methods , Aged , Computer Security , Cooperative Behavior , Female , Humans , Male , Middle Aged , Neuropsychological Tests , Patient Satisfaction , VideoconferencingABSTRACT
Despite growing popularity and potential advantages of robotics in general surgery, there is very little published data regarding robotic inguinal hernia repair. This study examines a single surgeon's early experience with robotic TAPP inguinal hernia repair compared with laparoscopic TAPP repair in terms of feasibility and cost. We performed a retrospective review of 63 consecutive patients (24 laparoscopic and 39 robotic) who underwent inguinal hernia repair between December 2012-December 2014 at a single institution by a single surgeon. Data examined included gender, age, BMI, operative times, recovery room times, pain scale ratings, and cost. Patient groups were the same in terms of age and BMI. The mean operative time (77.5 vs 60.7 min, p = 0.001) and room time (109.3 vs 93.0 min, p = 0.001) were significantly longer for the robotic vs the laparoscopic patients. Recovery room time (109.1 vs 133.5 min, p = 0.026) and average pain scores in recovery (2.5 vs 3.8, p = 0.02) were significantly less for the robotic group. The average direct cost of the laparoscopic group was $3216 compared with $3479 for the robotic group. The average contribution margin for the laparoscopic group was $2396 compared with $2489 for the robotic group. Robotic TAPP inguinal hernia repair had longer operative times, but patients spent less time in recovery and noted less pain than patients who underwent laparoscopic TAPP inguinal hernia repair. The direct cost and contribution margin are nearly equivalent. These results should allow the continued investigation of this technique without concern over excess cost.
Subject(s)
Hernia, Inguinal/surgery , Herniorrhaphy/methods , Laparoscopy/methods , Robotic Surgical Procedures/methods , Administration, Oral , Adult , Aged , Aged, 80 and over , Analgesics/administration & dosage , Analgesics/economics , Costs and Cost Analysis , Female , Hernia, Inguinal/economics , Herniorrhaphy/economics , Humans , Laparoscopy/economics , Length of Stay , Male , Middle Aged , Operative Time , Pain Measurement , Pain, Postoperative/etiology , Retrospective Studies , Robotic Surgical Procedures/economics , Surgical Mesh/economics , Young AdultABSTRACT
PURPOSE: The purpose of this study is to investigate the structure and measurement properties of the Aphasia Communication Outcome Measure (ACOM), a patient-reported outcome measure of communicative functioning for persons with aphasia. METHOD: Three hundred twenty-nine participants with aphasia responded to 177 items asking about communicative functioning. The data were analyzed using a categorical item factor analysis approach. Validity of ACOM scores on the basis of their convergence with performance-based, clinician-reported, and surrogate-reported assessments of communication was also assessed. RESULTS: Fifty-nine items that obtained adequate fit to a modified bifactor measurement model and functioned similarly across several demographic and clinical subgroupings were identified. The factor model estimates were transformed to item response theory graded response model parameters, and the resulting score estimates showed good precision and moderately strong convergence with other measures of communicative ability and functioning. A free software application for administration and scoring of the ACOM item bank is available from the first author. CONCLUSIONS: The ACOM provides reliable measurement of patient-reported communicative functioning in aphasia. The results supported the validity of ACOM scores insofar as (a) factor analyses provided support for a coherent measurement model, (b) items functioned similarly across demographic and clinical subgroups, and (c) scores showed good convergence with measures of related constructs.
Subject(s)
Aphasia/diagnosis , Communication , Outcome Assessment, Health Care/methods , Aphasia/etiology , Calibration , Factor Analysis, Statistical , Female , Humans , Information Dissemination , Male , Middle Aged , Reproducibility of Results , Self Report , Software , Stroke/complications , Stroke/diagnosisABSTRACT
Although generativity is used as a central cultural construct within life course theory to illustrate how older persons create interpersonal ties, it is also tied to key concepts in social exchange theory since generative acts can provide a way for achieving more equity in intergenerational power relationships. Without opportunities for older adults to invest themselves in younger generations, they may no longer feel needed within their family or community. In this article, we discuss the relationship of generativity and dementia through the generative activities of older persons with cognitive decline. Field notes from 8 months of research in a dementia-care setting as well as interviews with 20 residents were thematically analyzed to identify: (a) generative acts among people with dementia; (b) residents' expressions regarding giving to others; and (c) barriers to generativity. Examining generativity among people with dementia requires that one considers the subjective experience of the condition and understands that many social behaviors remain intact irrespective of any quantified cognitive loss (captured here through the use of case examples).
Subject(s)
Dementia/psychology , Intergenerational Relations , Interpersonal Relations , Long-Term Care/psychology , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Social TheoryABSTRACT
BACKGROUND: Assisted living (AL) is a growing and operationally diverse option in our nation's long-term care system. Many consumers view AL communities as a viable option to receive needed services and age in place. However, little is known about the factors that influence residents' ability to age in place when experiencing cognitive decline. OBJECTIVE: To estimate the association of resident and site characteristics to length of stay, reason for leaving and destination for residents with dementia in assisted living. In particular, this study sought to assess the impact of an 'Enhanced' Program intended to facilitate aging in place. METHOD: Data were gathered from a retrospective evaluation of residents' clinical records (N=312) in five dementia-specific ALs (3 with robust enhanced programs) in the Northeastern United States. RESULTS: The time to 50% survival for the full cohort (N=312) was 20.2 months. Both age at move-in and gender were statistically significant predictors of length of stay. Sites with robust support for aging in place exhibited a statistically significant longer length of stay compared to sites with limited support. Of the residents who left or died (N=165) nearly one quarter (24%) were able to stay until the end of their lives, while 52% moved to a nursing home, primarily because of family, financial, or medical concerns. Few residents left these settings because of behavioral problems. CONCLUSION: AL sites with a more robust commitment to an aging in place model and a willingness to provide palliative care demonstrated a significantly longer length of stay.
Subject(s)
Assisted Living Facilities/statistics & numerical data , Dementia/nursing , Independent Living/statistics & numerical data , Length of Stay/statistics & numerical data , Terminal Care/statistics & numerical data , Age Factors , Aged , Aged, 80 and over , Female , Humans , Male , Program Evaluation , Retrospective Studies , Sex FactorsABSTRACT
PURPOSE: The purpose of this article is to describe the rationale, clinical processes, and outcomes of an intensive comprehensive aphasia program (ICAP). METHOD: Seventy-three community-dwelling adults with aphasia completed a residentially based ICAP. Participants received 5 hr of daily 1:1 evidence-based cognitive-linguistically oriented aphasia therapy, supplemented with weekly socially oriented and therapeutic group activities over a 23-day treatment course. Standardized measures of aphasia severity and communicative functioning were obtained at baseline, program entry, program exit, and follow-up. Results were analyzed using a Bayesian latent growth curve model with 2 factors representing (a) the initial level and (b) change over time, respectively, for each outcome measure. RESULTS: Model parameter estimates showed reliable improvement on all outcome measures between the initial and final assessments. Improvement during the treatment interval was greater than change observed across the baseline interval, and gains were maintained at follow-up on all measures. CONCLUSIONS: The rationale, clinical processes, and outcomes of a residentially based ICAP have been described. ICAPs differ with respect to treatments delivered, dosing parameters, and outcomes measured. Specifying the defining components of complex interventions, establishing their feasibility, and describing their outcomes are necessary to guide the development of controlled clinical trials.
Subject(s)
Aphasia/therapy , Language Therapy/methods , Language Therapy/organization & administration , Residential Treatment/methods , Adult , Aged , Aphasia/etiology , Appointments and Schedules , Bayes Theorem , Cognitive Behavioral Therapy/methods , Cognitive Behavioral Therapy/organization & administration , Female , Humans , Language Tests , Male , Middle Aged , Program Evaluation , Psycholinguistics/methods , Psycholinguistics/organization & administration , Residential Treatment/organization & administration , Stroke/complications , Stroke/therapy , Treatment Outcome , VeteransABSTRACT
PURPOSE: The dominant clinical view of dementia and its treatment are through the biomedical lens-an approach to understanding the dementias that focuses on bodily and mental pathology and symptomology. Person-centered care (PCC) represents a shift in focus away from biomedical approach in elder care. The primary objective of this research was to examine how PCC was defined, shaped, and practiced by staff members within a dementia care setting. DESIGN AND METHODS: Ethnographic data were collected over an 8-month period using participant observation (400 hr) and ethnographic interviews with 20 people with dementia and 25 staff members of Cedar Winds, a dementia-specific long-term care setting that had a strong organizational support for using a person-centered approach to dementia care. RESULTS: The observed cultural matrix of othering is the focus of this article and represents the cultural processes that prevented PCC from being enacted within Cedar Winds. The three main characteristics through which the residents were othered and PCC was obstructed were (a) dementia as a master status, (b) functional dependence, and (c) aggressiveness. IMPLICATIONS: This article concludes by examining the efforts that could reduce the extent of othering and improve the person centeredness of elder care settings.
Subject(s)
Attitude of Health Personnel/ethnology , Dementia/therapy , Homes for the Aged/organization & administration , Nursing Homes/organization & administration , Organizational Culture , Patient Care/standards , Aged , Aged, 80 and over , Aggression/psychology , Dementia/nursing , Dementia/psychology , Humans , Long-Term Care , Male , Mental Status Schedule , Middle Aged , Prejudice , Professional-Patient Relations , Self Care , Social Environment , Social IdentificationABSTRACT
PURPOSE: To evaluate the dimensionality and measurement invariance of the aphasia communication outcome measure (ACOM), a self- and surrogate-reported measure of communicative functioning in aphasia. METHODS: Responses to a large pool of items describing communication activities were collected from 133 community-dwelling persons with aphasia of ≥ 1 month post-onset and their associated surrogate respondents. These responses were evaluated using confirmatory and exploratory factor analysis. Chi-square difference tests of nested factor models were used to evaluate patient-surrogate measurement invariance and the equality of factor score means and variances. Association and agreement between self- and surrogate reports were examined using correlation and scatterplots of pairwise patient-surrogate differences. RESULTS: Three single-factor scales (Talking, Comprehension, and Writing) approximating patient-surrogate measurement invariance were identified. The variance of patient-reported scores on the Talking and Writing scales was higher than surrogate-reported variances on these scales. Correlations between self- and surrogate reports were moderate-to-strong, but there were significant disagreements in a substantial number of individual cases. CONCLUSIONS: Despite minimal bias and relatively strong association, surrogate reports of communicative functioning in aphasia are not reliable substitutes for self-reports by persons with aphasia. Furthermore, although measurement invariance is necessary for direct comparison of self- and surrogate reports, the costs of obtaining invariance in terms of scale reliability and content validity may be substantial. Development of non-invariant self- and surrogate report scales may be preferable for some applications.
Subject(s)
Communication , Quality of Life , Surveys and Questionnaires , Aged , Aged, 80 and over , Aphasia/psychology , Aphasia/rehabilitation , Bias , Caregivers/psychology , Factor Analysis, Statistical , Female , Humans , Male , Middle Aged , Outcome Assessment, Health Care , Psychometrics , Reproducibility of Results , Self Report , Socioeconomic FactorsABSTRACT
This paper explores the role of religious belief in the experiences of dying and death in a Catholic nursing home. The home appeals to residents and their families due to the active religious presence. Thus, religion is a salient element of the "local culture" which exists in this long-term care setting. The preeminence of faith within the organization and the personal religious convictions of staff, residents, and families may drive how death and dying are discussed and experienced in this setting, as well as the meanings that are attached to them. This paper examines the relationship between faith and the experience and meaning of death in this nursing home. We present themes that emerged from open-ended interviews with residents, family members, and staff, gathered between 1996 and 2004. The data indicate that people select the home due to their Catholic faith and the home's religious tone. Themes also show that belief in God and an afterlife helps shape the experience of dying and death for our informants. Our paper does not compare ease of dying with other nursing homes or within other belief systems.