Identifying and Defining the Components and Indicators of Participant Direction

In this dissertation, I analyzed the design of various programs of participant direction in long-term care in the U.S. programs of participant direction offer the consumer (i.e., individuals with a disability and individuals who are elderly) or surrogate decision maker some level of choice and control over the consumer's long-term care supports and services. I conducted a qualitative documentary analysis using grounded theory methods in order to identify and define the range of components and indicators available in programs of participant direction. I sampled 53 documents from 2004 through 2008 representing multiple disabilities and program funding sources. Findings resulted in the development of a grounded theory of program design and a conceptual framework depicting an ideal type of program and its organization. All programs were found to have two major theoretical constructs, what and how, under which all identified components and indicators could be organized. I identified and defined a total of five components and 28 indicators. Each indicator was represented by one or more continua depicting the range of consumer or surrogate choice and control over the indicator. The findings of this study have implications for improving the rigor of research and development of long-term care policy

The Family Employment Awareness Training (FEAT): A Mixed-method Follow-up

This is the author's accepted manuscript. The original publication is available at http://dx.doi.org/10.3233/JVR-130652.BACKGROUND: Although competitive employment (i.e., employment in community settings among peers without disabilities for minimum wage or higher) is associated with numerous benefits for individuals with disabilities (Johannesen, McGrew, Griss, & Born, 2007), people with disabilities are underrepresented in the competitive workforce (National Disability Rights Network, 2011). OBJECTIVES: This study sought to determine the longer-term effectiveness of the Family Employment Awareness Training (FEAT) on the expectations and knowledge of participants who attended the program in 2010-2011. The study also sought to explore the perceptions of families who attended the program. METHODS: We distributed a FEAT Follow-up Survey to 220 participants to evaluate the program’s longer-term influence on participants’ expectations and knowledge and conducted 13 semi-structured interviews using a FEAT Interview Protocol to explore families’ perceptions. RESULTS: Study findings indicated that participants who attended FEAT rated their expectations as average and rated their knowledge above average one to two years after attending FEAT. An analysis of interview data indicated that families described several aspects of FEAT they liked, aspects they disliked, and suggested improvements for the program. CONCLUSIONS: Results from this study indicate that FEAT is a promising approach to improving competitive employment outcomes for individuals with disabilities

Identifying and Defining the Structures That Guide the Implementation of Participant Direction Programs and Support Program Participants: A Document Analysis

This is the author's accepted manuscript. The published version is available at http://dx.doi.org/10.1177/1044207313514112Participant direction (PD) programs offer the individual with a disability or his or her surrogate decision maker varying degrees of choice and control over the individual’s supports and services. We conducted a document analysis using grounded theory methods to identify the design elements of participant direction programs in long-term care. We analyzed 53 documents across multiple disabilities and funding sources. We identified and defined two major components of participant direction programs: policy and aid and assistance. The component of policy was represented by three structures that guide implementation of participant direction programs: (a) option to participant-direct, (b) participation stipulations, and (c) provider qualifications. The component of aid and assistance was represented by 11 structures that support program participants: (a) financial management services, (b) employer of record, (c) emergency back-up, (d) worker registry, (e) advice/counseling, (f) managerial assistance, (g) information dissemination products, (h) service quality monitoring, (i) service coordination, (j) participant training, and (k) provider training. Each structure was represented by one or more continua depicting the range of choice and control participants may have over the structure. The findings of this study have implications for improving the standardization of research on participant direction programs and the development of long-term care policy

Identifying and defining the activities of participant direction programs: A document analysis

This is the author's accepted manuscript. The published version is available at http://dx.doi.org/10.1177/1044207313502538We analyzed the design of various U.S. programs of participant direction offering participants (individual with a disability or his or her surrogate decision-maker) some level of choice and control over the individual’s long-term care supports and services. We used grounded theory methods to conduct a document analysis of 53 documents published from 2004 through 2008 representing multiple disabilities and program funding sources. In our analysis, we identified three major components (planning, budgeting, and employing) over which participants had the opportunity to exercise choice and control and the activities associated with each. Activities were represented by one or more continua illustrating the range of participant choice and control over the indicator. The component of planning consisted of the activity of care plan development. The budgeting component included the activities of (a) development, (b) individualization, and (c) authority. The employing component included the activities of (a) identifying/selecting providers, (b) hiring/employing providers, (c) scheduling providers, (d) training providers, (e) managing/directing/supervising providers, (f) disciplining/dismissing providers, (g) keeping records, (h) managing payroll, (i) locating emergency back-up, and (j) monitoring service quality. The findings of this study have implications for improving policy, practice, and research in the field of long-term care

Effect of Functional Capacity Evaluation information on the judgment of physicians about physical work ability in the context of disability claims

Purpose To test whether Functional Capacity Evaluation (FCE) information lead insurance physicians (IPs) to change their judgment about the physical work ability of claimants with musculoskeletal disorders (MSDs). Methods Twenty-seven IPs scored twice the physical work ability of two claimants for 12 specified activities, using a visual analogue scale. One claimant performed an FCE, the other served as a control. Outcome measure was the difference between experimental and control group in number of shifts in the physical work ability for the total of 12 specified activities. Results The IPs changed their judgment about the work ability 141 times when using FCE information compared to 102 times when not using this information (P-value = 0.001), both in the direction of more and less ability. Conclusions The IPs change their judgment of the physical work ability of claimants with MSDs in the context of disability claim procedures more often when FCE information is provide

Prime Focus Spectrograph (PFS) for the Subaru Telescope: Overview, recent progress, and future perspectives

PFS (Prime Focus Spectrograph), a next generation facility instrument on the 8.2-meter Subaru Telescope, is a very wide-field, massively multiplexed, optical and near-infrared spectrograph. Exploiting the Subaru prime focus, 2394 reconfigurable fibers will be distributed over the 1.3 deg field of view. The spectrograph has been designed with 3 arms of blue, red, and near-infrared cameras to simultaneously observe spectra from 380nm to 1260nm in one exposure at a resolution of ~1.6-2.7A. An international collaboration is developing this instrument under the initiative of Kavli IPMU. The project is now going into the construction phase aiming at undertaking system integration in 2017-2018 and subsequently carrying out engineering operations in 2018-2019. This article gives an overview of the instrument, current project status and future paths forward.Comment: 17 pages, 10 figures. Proceeding of SPIE Astronomical Telescopes and Instrumentation 201

"I never had the money for blood testing" – Caretakers' experiences of care-seeking for fatal childhood fevers in rural Uganda – a mixed methods study

<p>Abstract</p> <p>Background</p> <p>The main killer diseases of children all manifest as acute febrile illness, yet are curable with timely and adequate management. To avoid a fatal outcome, three essential steps must be completed: caretakers must recognize illness, decide to seek care and reach an appropriate source of care, and then receive appropriate treatment. In a fatal outcome some or all of these steps have failed and it remains to be elucidated to what extent these fatal outcomes are caused by local disease perceptions, inappropriate care-seeking or inadequate resources in the family or health system. This study explores caretakers' experiences of care-seeking for childhood febrile illness with fatal outcome in rural Uganda to elucidate the most influential barriers to adequate care.</p> <p>Methods</p> <p>A mixed methods approach using structured Verbal/Social autopsy interviews and in-depth interviews was employed with 26 caretakers living in Iganga/Mayuge Demographic Surveillance Site who had lost a child 1–59 months old due to acute febrile illness between March and June 2006. In-depth interviews were analysed using content analysis with deductive category application.</p> <p>Results</p> <p>Final categories of barriers to care were: 1) "Illness interpretation barriers" involving children who received delayed or inappropriate care due to caretakers' labelling of the illness, 2) "Barriers to seeking care" with gender roles and household financial constraints hindering adequate care and 3) "Barriers to receiving adequate treatment" revealing discontents with providers and possible deficiencies in quality of care. Resource constraints were identified as the underlying theme for adequate management, both at individual and at health system levels.</p> <p>Conclusion</p> <p>The management of severely ill children in this rural setting has several shortcomings. However, the majority of children were seen by an allopathic health care provider during the final illness. Improvements of basic health care for children suffering from acute febrile illness are likely to contribute to a substantial reduction of fatal outcomes. Health care providers at all levels and private as well as public should receive training, support, equipment and supplies to enable basic health care for children suffering from common illnesses.</p

Adherence to Combination Prophylaxis for Prevention of Mother-to-Child-Transmission of HIV in Tanzania

BACKGROUND: Since 2008, Tanzanian guidelines for prevention of mother-to-child-transmission of HIV (PMTCT) recommend combination regimen for mother and infant starting in gestational week 28. Combination prophylaxis is assumed to be more effective and less prone to resistance formation compared to single-drug interventions, but the required continuous collection and intake of drugs might pose a challenge on adherence especially in peripheral resource-limited settings. This study aimed at analyzing adherence to combination prophylaxis under field conditions in a rural health facility in Kyela, Tanzania. METHODS AND FINDINGS: A cohort of 122 pregnant women willing to start combination prophylaxis in Kyela District Hospital was enrolled in an observational study. Risk factors for decline of prophylaxis were determined, and adherence levels before, during and after delivery were calculated. In multivariate analysis, identified risk factors for declining pre-delivery prophylaxis included maternal age below 24 years, no income-generating activity, and enrolment before 24.5 gestational weeks, with odds ratios of 5.8 (P = 0.002), 4.4 (P = 0.015) and 7.8 (P = 0.001), respectively. Women who stated to have disclosed their HIV status were significantly more adherent in the pre-delivery period than women who did not (P = 0.004). In the intra- and postpartum period, rather low drug adherence rates during hospitalization indicated unsatisfactory staff performance. Only ten mother-child pairs were at least 80% adherent during all intervention phases; one single mother-child pair met a 95% adherence threshold. CONCLUSIONS: Achieving adherence to combination prophylaxis has shown to be challenging in this rural study setting. Our findings underline the need for additional supervision for PMTCT staff as well as for clients, especially by encouraging them to seek social support through status disclosure. Prophylaxis uptake might be improved by preponing drug intake to an earlier gestational age. Limited structural conditions of a healthcare setting should be taken into serious account when implementing PMTCT combination prophylaxis