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1.
J Gen Intern Med ; 37(Suppl 1): 105-108, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35349021

RESUMO

There is a need for clear strategies and procedures to operationalize stakeholder engagement in research studies. Clear guidelines that promote shared leadership among study investigators and research stakeholders are important for inclusive and sustainable partnerships. Such guidelines may take the form of a governance charter and can be a means for encouraging the participation and inclusion of stakeholders who may have little to no experience with research or are otherwise underrepresented in research. This perspective article presents the Stakeholder-Centric Engagement Charter (SCEC), one effort to operationalize a stakeholder engagement approach between researchers and an advisory committee as guided by the Patient-Centered Outcomes Research Institute's (PCORI) Research Engagement Principles (i.e., reciprocal relationships, partnerships, co-learning, transparency-honesty-trust). Building on the SCEC can help future investigators develop a study-specific, dynamic, governance document outlining advisory committee and research team preferences in areas such as role expectations, study governance, and decision-making procedures.


Assuntos
Avaliação de Resultados da Assistência ao Paciente , Participação dos Interessados , Humanos , Liderança , Pesquisadores
2.
Int Psychogeriatr ; 33(4): 419-428, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33757615

RESUMO

OBJECTIVE: To determine the willingness-to-pay (WTP) of family caregivers to learn care strategies for persons living with dementia (PLwD). DESIGN: Randomized clinical trial. SETTING: Community-dwelling PLwD and their caregivers (dyads) in Maryland and Washington, DC. PARTICIPANTS: 250 dyads. INTERVENTION: Tailored Activity Program (TAP) compared to attention control. TAP provides activities tailored to the PLwD and instructs caregivers in their use. MEASUREMENT: At baseline, 3 and 6 months, caregivers were asked their WTP per session for an 8-session 3-month in-home nonpharmacologic intervention to address behavioral symptoms and functional dependence. RESULTS: At baseline, 3 and 6 months, caregivers assigned to TAP were willing to pay $26.10/session (95%CI:$20.42, $33.00), $28.70 (95%CI:$19.73, $39.30), and $22.79 (95%CI: $16.64, $30.09), respectively; attention control caregivers were willing to pay $37.90/session (95%CI: $27.10, $52.02), $30.92 (95%CI: $23.44, $40.94), $27.44 (95%CI: $20.82, $35.34), respectively. The difference in baseline to 3 and 6 months change in WTP between TAP and the attention control was $9.58 (95%CI: -$5.00, $25.47) and $7.15 (95%CI: -$5.72, $21.81). The difference between TAP and attention control in change in the proportion of caregivers willing to pay something from baseline to 3 and 6 months was -12% (95%CI: -28%, -5%) and -7% (95%CI:-25%, -11%), respectively. The difference in change in WTP, among caregivers willing to pay something, between TAP and attention control from baseline to 3 and 6 months was $17.93 (95%CI: $0.22, $38.30) and $11.81 (95%CI: -$2.57, $28.17). CONCLUSIONS: Family caregivers are willing to pay more for an intervention immediately following participation in a program similar to which they were asked to value.


Assuntos
Cuidadores/economia , Cuidadores/psicologia , Demência/economia , Demência/terapia , Saúde da Família/economia , Idoso de 80 Anos ou mais , Sintomas Comportamentais , District of Columbia , Feminino , Humanos , Vida Independente/economia , Estudos Longitudinais , Masculino , Maryland , Pessoa de Meia-Idade
3.
BMC Geriatr ; 21(1): 581, 2021 10 20.
Artigo em Inglês | MEDLINE | ID: mdl-34670502

RESUMO

BACKGROUND: People living with dementia (PLWD) and caregivers are adversely impacted by lack of meaningful activity leading to worse symptoms and impaired quality-of-life. There is a critical need to develop effective and well-tolerated treatments that mitigate clinical symptoms, engage PLWD and support caregiver wellbeing. We tested whether, compared to attention control, the Tailored Activity Program (TAP) reduced clinical symptoms and health-related events, and improved caregiver wellbeing, and if TAP activities were well-tolerated. METHODS: We conducted a single-blind randomized controlled trial among 250 dyads recruited from Baltimore-Washington DC (2012-2016) with a dementia diagnosis and clinically significant agitation/aggression. Dyads were randomized to TAP (n = 124) or attention control (n = 126), and interviewed at baseline, 3 (endpoint) and 6-months (follow-up) by interviewers masked to group allocation. TAP assessed PLWD abilities/interests, instructed caregivers in using prescribed activities, and provided dementia education and stress reduction techniques. Attention controls received disease education and home safety tips. Both groups had up to 8 home visits over 3-months. The primary outcome was frequency by severity scores for agitation/aggression subscales of Neuropsychiatric Inventory-Clinician using caregiver ratings. Secondary outcomes included number of instrumental (IADL) and activities of daily living (ADL) needing assistance, caregiver wellbeing, and confidence using activities. Health-related events (PLWD death, hospitalizations, caregiver hospitalization, depression) and perceived study benefits were captured over 6 months. PLWD tolerability of prescribed activities was examined. RESULTS: Of 250 dyads, most caregivers were female (81.2 %, n = 203), non-spouses (54.4 %, n = 136), white (59.2 %, n = 145) or African American (36.7 %, n = 90) with mean age = 65.4 (SD = 12.6). PLWD were mostly female (63.2 %, n = 158) with mean age = 81.4 (SD = 7.9), and mean MMSE = 14.3 (SD = 7.8). At 3-months, compared to controls, TAP conferred no benefit to agitation/aggression (p = 0.43, d = 0.11), but resulted in less IADL (p = 0.02, d=-0.33), and ADL (p = 0.04, d=-0.30) assistance, improved caregiver wellbeing (p = 0.01, d = 0.39), and confidence using activities (p = 0.02, d = 0.32). By 6-months, 15 PLWD in TAP had ≥ 1 health-related event versus 28 PLWD in control, demonstrating 48.8 % improvement in TAP (p = 0.03). TAP caregivers were more likely to perceive study benefits. Prescribed activities were well-tolerated. CONCLUSIONS: Although TAP did not benefit agitation/aggression, it impacted important outcomes that matter to families warranting its use in dementia care. CLINICAL TRIAL REGISTRATION: Clinicaltrials.gov # NCT01892579 at https://clinicaltrials.gov/ ; Date of clinical trial registration: 04/07/2013; Date first dyad enrolled: 15/11/2013.


Assuntos
Cuidadores , Demência , Atividades Cotidianas , Idoso , Idoso de 80 Anos ou mais , Demência/diagnóstico , Demência/terapia , Feminino , Humanos , Masculino , Qualidade de Vida , Método Simples-Cego
4.
Am J Occup Ther ; 75(5)2021 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-34780633

RESUMO

Unpaid caregivers are often expected to help family members or friends overcome activity limitations and participation restrictions to successfully age in place. Caregivers assume multiple responsibilities, such as managing their own physical and psychosocial needs and navigating a complex health care system, and many feel ill equipped to fulfill the necessary health care responsibilities for their care recipients. Underprepared caregivers may cause poor outcomes for care recipients. Federal and state policy proposals call attention to the need to better support caregivers, especially as their numbers increase. Occupational therapy practitioners are well positioned to effectively engage caregivers as they navigate the health care system. The occupational therapy process looks broadly at the functional abilities, environmental contexts, and occupational demands that play a pivotal role in successful aging in place for clients and better outcomes for their caregivers. Now is the time to define occupational therapy's distinct value to this area.


Assuntos
Vida Independente , Terapia Ocupacional , Atividades Cotidianas , Idoso , Cuidadores , Família , Humanos , Estados Unidos
5.
Occup Ther Health Care ; 35(1): 105-121, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33487092

RESUMO

Workplace aggression (WPA) among healthcare workers is a pervasive and serious problem in the healthcare industry, yet there is a poor understanding of WPA in the profession of occupational therapy (OT). The authors employed a mixed method design using a Likert scale survey and focus groups from two different settings and locations to explore WPA experiences of OT practitioners working in healthcare settings. Participants for the focus groups totaled 14 and 109 surveys were returned. The findings revealed that 100% of the focus group participants and 67% of the survey respondents report exposure to specific types of WPA. Key underlying causes relate to the challenges occupational therapy practitioner's face in advocating their professional role and values in a predominant biomedical setting. These findings are important not only to increase awareness among practitioners, leaders, and educators but to further examine how occupational therapy's unique role in healthcare can be fully recognized.


Assuntos
Agressão , Terapeutas Ocupacionais/psicologia , Cultura Organizacional , Local de Trabalho , Adulto , Feminino , Grupos Focais , Humanos , Masculino , Inquéritos e Questionários
6.
Int J Geriatr Psychiatry ; 34(9): 1301-1307, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-30035341

RESUMO

OBJECTIVE: To evaluate the efficacy of the tailored activity program-outpatient version (TAP-O) and to reduce neuropsychiatric symptoms (NPS) in patients with dementia and caregiver burden compared with a control group (psychoeducation intervention). METHODS: Twenty-one persons with dementia and their caregivers were recruited and randomized. The intervention group received TAP-O, designed for outpatients with dementia and their caregivers. TAP-O consisted of eight sessions in which an occupational therapist assessed the patient's abilities and interests; prescribed tailored activities; and educated caregivers about dementia, NPS, and how to implement meaningful activities in the daily routine. The control group received eight sessions of a psychoeducation intervention about dementia and NPS. RESULTS: Compared with controls, patients receiving TAP-O had a significant decrease in hallucination (P = 0.04), agitation (P = 0.03), anxiety (P = 0.02), aggression (P = 0.01), sleep disorder (P = 0.02), aberrant motor behavior (P = 0.02), and in caregiver burden (P = 0.003). CONCLUSIONS: Findings suggest that TAP-O may be an effective nonpharmacological strategy to reduce NPS of outpatients with dementia and to minimize caregiver burden.


Assuntos
Cuidadores/psicologia , Demência/psicologia , Demência/terapia , Atividades de Lazer/psicologia , Terapia Ocupacional/métodos , Estresse Psicológico/prevenção & controle , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/métodos
7.
Am J Occup Ther ; 73(2): 7302205160p1-7302205160p9, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30915977

RESUMO

IMPORTANCE: Neuropsychiatric behaviors of persons with dementia, including agitation, aggression, and rejection of care, are almost universal; occur throughout the disease process; and have negative consequences for both persons with dementia and their caregivers. Nonpharmacological approaches are now recognized as first-line treatment to address these behaviors. One promising approach is activity tailored to the person's interests, abilities, and physical and social environment. An evidence-based program, New Ways for Better Days: Tailoring Activities for Persons With Dementia and Their Caregivers (TAP), draws on occupational therapy principles (person-environment-occupation fit, activity analysis) to meaningfully engage persons with dementia. OBJECTIVE: This case report describes the TAP protocol and clinical reasoning processes underlying use of tailored activities as a therapeutic modality to address dementia-related neuropsychiatric behaviors. DESIGN: This is a case study of an African-American woman in her 60s caring for her father, age 92, who has severe dementia and multiple behaviors. OUTCOMES AND MEASURES: Primary outcomes in this case report include the person with dementia's engagement in an activity and the reported neuropsychiatric behaviors. In addition, the caregiver's confidence in using activities is reported. These and other measures from the TAP protocol are described in full. RESULTS: After working with an occupational therapist for eight sessions, the person with dementia's engagement in activity increased by 50% and his frequency of vocal disturbance decreased, and the caregiver felt more confident in using activities with her father. CONCLUSION AND RELEVANCE: This case report illustrates how occupational therapists working with families of persons with dementia can use the TAP protocol to help them manage neuropsychiatric behaviors by tailoring activities. WHAT THIS ARTICLE ADDS: Occupational therapists are uniquely qualified to systematically assess the cognitive functioning of persons with dementia, caregivers, and home environments and to integrate this information to derive and implement activities tailored to the person's capacities and context, thereby reducing neuropsychiatric behaviors and increasing engagement in meaningful activity.


Assuntos
Atividades Cotidianas/psicologia , Cuidadores/psicologia , Demência/terapia , Terapia Ocupacional/métodos , Qualidade de Vida/psicologia , Idoso de 80 Anos ou mais , Sintomas Comportamentais/diagnóstico , Sintomas Comportamentais/etiologia , Sintomas Comportamentais/terapia , Cuidadores/educação , Demência/enfermagem , Demência/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde
8.
Am J Occup Ther ; 72(1): 7201390010p1-7201390010p6, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29280729

RESUMO

Evidence Connection articles provide a clinical application of systematic reviews developed in conjunction with the American Occupational Therapy Association's (AOTA's) Evidence-Based Practice Project. In this Evidence Connection article, we describe a case report of a person with Alzheimer's disease. The occupational therapy assessment and intervention process in the home setting is described. Findings from the systematic reviews on this topic were published in the November/December 2017 issue of the American Journal of Occupational Therapy and in AOTA's Occupational Therapy Practice Guidelines for Adults With Alzheimer's Disease and Related Major Neurocognitive Disorders. Each article in this series summarizes the evidence from the published reviews on a given topic and presents an application of the evidence to a related clinical case. Evidence Connection articles illustrate how the research evidence from the reviews can be used to inform and guide clinical reasoning.


Assuntos
Doença de Alzheimer/reabilitação , Terapia Ocupacional , Medicina Baseada em Evidências , Humanos
9.
Am J Occup Ther ; 71(5): 7105180020p1-7105180020p10, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28809652

RESUMO

OBJECTIVE: The goal of the evidence review was to evaluate the effectiveness of interventions for caregivers of people with Alzheimer's disease and related major neurocognitive disorders that facilitate the ability to maintain participation in the caregiver role. METHOD: Scientific literature published in English between January 2006 and April 2014 was reviewed. Databases included MEDLINE, PsycINFO, CINAHL, OTseeker, and the Cochrane Database of Systematic Reviews. RESULTS: Of 2,476 records screened, 43 studies met inclusion criteria. Strong evidence shows that multicomponent psychoeducational interventions improve caregiver quality of life (QOL), confidence, and self-efficacy and reduce burden; cognitive reframing reduces caregiver anxiety, depression, and stress; communication skills training improves caregiver skill and QOL in persons with dementia; mindfulness-based training improves caregiver mental health and reduces stress and burden; and professionally led support groups enhance caregiver QOL. CONCLUSION: Strong evidence exists for a spectrum of caregiver interventions. Translation of effective interventions into practice and evaluation of sustainability is necessary.


Assuntos
Doença de Alzheimer/enfermagem , Ansiedade/reabilitação , Cuidadores/psicologia , Depressão/reabilitação , Terapia Ocupacional/métodos , Qualidade de Vida , Autoeficácia , Estresse Psicológico/reabilitação , Terapia Cognitivo-Comportamental , Humanos , Transtornos Neurocognitivos/reabilitação , Grupos de Autoajuda , Resultado do Tratamento
10.
Occup Ther Health Care ; 29(4): 429-41, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26338055

RESUMO

A scholarship of practice approach sets the stage for collaborative partnerships across academic and clinical practice settings that result in positive gains for all stakeholders. These gains include an enhanced ability to generate and apply relevant evidence in practice, disseminate knowledge and innovation, and ensure best practice is relevant to and effective for, people receiving services and their caregivers. This paper discusses national and international examples of collaborative, research-based practice initiatives that have implemented a scholarship of practice approach. The exemplars described here are framed within the Model of Human Occupation, which addresses the importance of volition, habits, roles, environment, and performance capacities in facilitating engagement in occupation for people with dementia. Research that focuses on how therapists adopt and use evidence in practice, as well as the opportunities and challenges for supporting therapists and their use of theory and evidence are discussed.


Assuntos
Comportamento Cooperativo , Atenção à Saúde , Demência/terapia , Pesquisa sobre Serviços de Saúde , Serviços de Saúde , Terapia Ocupacional , Pesquisa Translacional Biomédica , Idoso , Cuidadores , Serviços de Saúde para Idosos , Humanos , Guias de Prática Clínica como Assunto
11.
Am J Geriatr Psychiatry ; 22(6): 587-97, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23890928

RESUMO

OBJECTIVES: To examine prevalence of modifiable risk factors and their contribution to patient quality of life (QoL) as rated by dementia patients and family caregivers. DESIGN: Cross-sectional. SETTING: Home environment. PARTICIPANTS: 88 patients and their caregivers. MEASUREMENTS: Modifiable characteristics of home environments, patients, and caregivers were observed or obtained through interview. Demographics and ratings of patients' QoL were obtained from patients and caregivers. RESULTS: Patients had mean Mini-mental Status Examination (MMSE) score = 17.7 ± 4.6, (range: 10-28) on an average 7.7 ± 2.4 neuropsychiatric behaviors, 6.0 ± 3.1 health conditions and moderate functional challenges; 70.7% (N = 58) had fall risk; 60.5% (N = 52) had sleep problems at least once weekly; and 42.5% (N = 37) had pain. An average of 8.1 ± 5.2 home hazards and 5.4 ± 4.1 adaptations were observed; 51.7% had unmet device/navigation needs. Patients' and caregivers' QoL ratings were unrelated to MMSE; and patients' self-rated QoL was higher than rated by caregivers. Number of health conditions and unmet device/navigation needs were inversely associated with patient self-rated QoL, and number of health conditions, frequency of behaviors, and level of negative communications were inversely associated with caregiver's assessment of patient QoL. Positive endorsement of caregiving was positively associated with caregiver's appraisal of patient QoL. Other factors were unrelated. CONCLUSIONS: Most patients lived at home with high fall risk, unmanaged behavioral symptoms, pain, sleep disturbances, environmental challenges, and multiple hazards. Except for health, factors associated with lower QoL differed for patients and caregivers. Results suggest need to improve QoL by addressing modifiable risk factors and tailoring interventions to patient and caregiver perspectives.


Assuntos
Cuidadores , Demência/psicologia , Assistência Domiciliar/psicologia , Qualidade de Vida , Atividades Cotidianas/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Demência/terapia , Feminino , Assistência Domiciliar/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Prevalência , Qualidade de Vida/psicologia , Fatores de Risco , Inquéritos e Questionários
12.
Gerontologist ; 64(4)2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-37501632

RESUMO

BACKGROUND AND OBJECTIVES: Alzheimer's disease and related dementias progress over time and result in cognitive decline, loss of independence, and behavioral and psychiatric symptoms of dementia that can lead to nursing home placement. Research has focused on examining the effects of nursing home placement on the family caregiver; however, their experiences are less understood. We sought to investigate the experiences and perceptions of family caregivers of nursing home residents with dementia. The objective was to create a conceptual model that explains the complex nature of the family caregiver experience. RESEARCH DESIGN AND METHODS: This study is part of a larger randomized controlled trial. Following a grounded theory approach, we completed 30 in-depth, one-on-one interviews with family caregivers of nursing home residents with dementia. Data analysis followed an iterative process that employed open, axial, and selective coding. RESULTS: Our conceptual model depicts the interrelationship between contributing factors that interrelate and impact family caregiver satisfaction with nursing home care. Six factors contribute to family caregiver satisfaction: family caregiver interactions with nursing home staff; staff management of resident behavioral symptoms; nursing home context; family caregiver knowledge of dementia; family caregiver strain; and the resident experience. DISCUSSION AND IMPLICATIONS: Our findings revealed family caregiver experiences that are unique to the institutional nursing home setting and not reflected in prior work focusing on experiences within community-based settings. Understanding family caregiver experiences and the contributors to how satisfaction in care is perceived, may foster collaboration and teamwork among families and staff.


Assuntos
Doença de Alzheimer , Cuidadores , Humanos , Família , Teoria Fundamentada , Casas de Saúde , Instituições de Cuidados Especializados de Enfermagem
13.
Gerontologist ; 64(8)2024 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-38769713

RESUMO

BACKGROUND AND OBJECTIVES: Few proven dementia-care programs are integrated into community-based agencies. We report on the acceptability and effectiveness of an evidence-based program, Care of People in their Environment (COPE), delivered by community-based agency staff. RESEARCH DESIGN AND METHODS: Pretest/post-test design with 3 data points (baseline, 3-month program completion, 6-month follow-up). COPE was delivered by 6 occupational therapists and 4 social workers at 2 agency sites with people living with dementia and caregivers. Staff assessed the interests and abilities of people living with dementia, home safety, caregiver challenges, and readiness to learn strategies. Staff provided dementia education, stress reduction, and nonpharmacological techniques tailored to caregiver-identified challenges. Acceptability (3- and 6-months), included completed sessions, upset with and confidence managing care challenges, strategies used, and program satisfaction. Effectiveness (3- and 6-months) included people living with dementia's health events (falls, emergency room visits, hospitalizations, and 911 calls), rehospitalization risk and functional dependence; and caregiver well-being and readiness. Benefits by in-person (n = 188) versus virtual/hybrid (n = 46) delivery due to Coronavirus Disease-2019 were evaluated. RESULTS: Of 843 dyads screened, 271 (32.1%) enrolled, 246 (90.8%) completed COPE, and 234 (95.1%) completed ≥1 follow-up. Regarding acceptability, caregivers completed about 8 sessions, reported improved confidence and upset (p < .001), most implemented strategies 3-months (72.8%) and 6-months (83.5%), and expressed high program satisfaction. For effectiveness, compared to baseline, odds of people living with dementia's health events were lower including rehospitalization risk, although functional dependence increased; caregiver well-being (3-, 6-months, p < .001) and readiness (3-months, p < .01) improved. Outcomes did not differ by delivery mode. DISCUSSION AND IMPLICATIONS: Acceptability and effectiveness were strong. COPE resulted in tangible improvements for families regardless of delivery mode.


Assuntos
Cuidadores , Demência , Humanos , Demência/terapia , Feminino , Masculino , Idoso , Cuidadores/psicologia , COVID-19 , Idoso de 80 Anos ou mais , Aceitação pelo Paciente de Cuidados de Saúde , Avaliação de Programas e Projetos de Saúde , Pessoa de Meia-Idade , SARS-CoV-2
14.
Contemp Clin Trials Commun ; 34: 101161, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37347001

RESUMO

Background: The COVID-19 pandemic has underscored the daily challenges nursing home (NH) staff face caring for the residents living with Alzheimer's Disease and Related Dementias (ADRD). Non-pharmacological approaches are prioritized over off-label medication to manage the behavioral and psychological symptoms of ADRD. Yet, it is not clear how to best equip NH staff and families with the knowledge and strategies needed to provide non-pharmacological approaches to these residents. Methods: This clustered randomized trial will compare team- and problem-based approaches to non-pharmacological ADRD care. The team-based approach includes core training for all NH staff using a common language and strategies to support continuity and sustainability. The problem-based approach capitalizes on the expertise of the professional healthcare providers to target issues that arise. A convergent mixed methods design will be used to examine (a) comparative effectiveness of the two approaches on long-term NH resident outcomes and (b) whether either approach is protective against the negative consequences of COVID-19. The primary outcome is the percentage of ADRD residents with off-label antipsychotic medication use, which will be evaluated with an intent-to-treat approach. Staff and family caregiver perspectives will be explored using a multiple case study approach. Conclusion: This trial will be the first-ever evaluation of team- and problem-based approaches to ADRD care across multiple NHs and geographic regions. Results can provide health system leaders and policymakers with evidence on how to optimize ADRD training for staff in an effort to enhance ADRD care delivery.

15.
West J Nurs Res ; 43(10): 949-961, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33896283

RESUMO

Evaluating engagement in a research partnership can capture the success and impact of the research team-stakeholder partnerships. This article describes the Stakeholder-Centric Instrumentation Process (SCIP), an iterative method to develop an evaluation that reflects research team-stakeholder collective values, language, and priorities. We describe our implementation of the SCIP and provide the Stakeholder-Centric Engagement Evaluation, an evaluation developed in collaboration with our advisory committee. Mean scores across three administrations of the tool remained constant. We monitored responses received from our advisory committee during each administration for changes in scores that guided refinements to our stakeholder engagement strategy. Face validity and acceptability questions showed high satisfaction for the tool's time required to complete, (M = 4.50, SD = 0.86), clarity (M = 4.56, SD = 0.78), and relevance (M = 4.67, SD = 0.49) (maximum score = 5). The SCIP methodology and the Stakeholder-Centric Engagement Tool can be used during study planning and data collection to capture research team-stakeholder collaborations that reflect stakeholder priorities.


Assuntos
Projetos de Pesquisa , Participação dos Interessados , Humanos
16.
J Alzheimers Dis ; 83(1): 475-486, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34334394

RESUMO

BACKGROUND: Neuropsychiatric symptoms (NPS) such as aggression, apathy, agitation, and wandering may occur in up to 90%of dementia cases. International guidelines have suggested that non-pharmacological interventions are as effective as pharmacological treatments, however without the side effects and risks of medications. An occupational therapy method, called Tailored Activity Program (TAP), was developed with the objective to treat NPS in the elderly with dementia and has been shown to be effective. OBJECTIVE: Evaluate the efficacy of the TAP method (outpatient version) in the treatment of NPS in individuals with dementia and in the burden reduction of their caregivers. METHODS: This is a randomized, double-blind, controlled clinical trial for the treatment of NPS in dementia. Outcome measures consisted of assessing the NPS of individuals with dementia, through the Neuropsychiatric Inventory-Clinician rating scale (NPI-C), and assessing the burden on their caregivers, using the Zarit Scale. All the participants were evaluated pre-and post-intervention. RESULTS: 54 individuals with dementia and caregivers were allocated to the experimental (n = 28) and control (n = 26) groups. There was improvement of the following NPS in the experimental group: delusions, agitation, aggressiveness, depression, anxiety, euphoria, apathy, disinhibition, irritability, motor disturbance, and aberrant vocalization. No improvement was observed in hallucinations, sleep disturbances, and appetite disorders. The TAP method for outpatient settings was also clinically effective in reducing burden between caregivers of the experimental group. CONCLUSION: The use of personalized prescribed activities, coupled with the caregiver training, may be a clinically effective approach to reduce NPS and caregiver burden of individuals with dementia.


Assuntos
Demência/terapia , Terapia Ocupacional , Pacientes Ambulatoriais/estatística & dados numéricos , Comportamento Problema , Idoso , Agressão/fisiologia , Apatia/fisiologia , Cuidadores/psicologia , Demência/psicologia , Feminino , Humanos , Masculino , Avaliação de Resultados em Cuidados de Saúde , Comportamento Problema/psicologia , Agitação Psicomotora/psicologia , Índice de Gravidade de Doença
17.
OTJR (Thorofare N J) ; 41(4): 268-274, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34109882

RESUMO

Older adults may benefit from interventions to successfully age in place. Research has an opportunity to test interventions and implementation strategies to fulfill the needs of older adults through collective evidence building. The purpose of this article is to describe the proceedings of the American Occupational Therapy Foundation (AOTF) 2019 Planning Grant Collective and describe the areas of research that were identified as critical. The AOTF convened scientists with expertise in the area of aging in place to catalyze research on aging in place for older adults. Four priority areas in the aging in place literature were highlighted: (a) identification of factors that support aging in place, (b) classification of processes by which family members and care partners are included in aging in place efforts, (c) categorization of technology supporting older adults to age in place, and (d) development of science that clarifies implementation of evidence-based practice.


Assuntos
Vida Independente , Terapia Ocupacional , Idoso , Família , Humanos , Estados Unidos
18.
Innov Aging ; 4(6): igaa053, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33367114

RESUMO

BACKGROUND AND OBJECTIVES: In the absence of effective pharmacotherapy, there is an urgent need to test evidence-based dementia care interventions using pragmatic trial approaches. We present results from a study in which an evidence-based, nonpharmacologic intervention for persons living with Alzheimer's disease and related dementia (ADRD) and their informal caregivers, Care of Persons with Dementia in their Environments (COPE), was tested in a Medicaid and state revenue-funded home and community-based service (HCBS) program. RESEARCH DESIGN AND METHODS: Using pragmatic trial design strategies, persons living with ADRD and their caregivers were randomly assigned as dyads to receive COPE plus usual HCBS (COPE; n = 145 dyads) or usual HCBS only (Usual Care or UC; n = 146 dyads). Outcomes were measured prerandomization, and 4 and 12 months postrandomization. Outcomes for persons living with ADRD included functional independence, activity engagement, self-reported quality of life, and behavioral and psychological symptoms. Caregiver outcomes included perceived well-being, confidence using dementia management strategies, and degree of distress caused by behavioral and psychological symptoms. RESULTS: After 4 months, caregivers receiving COPE reported greater perceived well-being (least squares mean = 3.2; 95% CI: 3.1-3.3) than caregivers receiving UC (3.0; 2.9-3.0; p < .001), and persons living with ADRD receiving COPE, compared to those receiving UC, showed a strong trend toward experiencing less frequent and less severe behavioral and psychological symptoms (9.7; 5.2-14.2 vs 12.7; 8.3-17.1; p = .07). After 12 months, persons living with ADRD receiving COPE were more engaged in meaningful activities (2.1; 2.0-2.1 vs 1.9; 1.9-2.0; p = .02) than those receiving UC. DISCUSSION AND IMPLICATIONS: Embedding COPE in a publicly funded HCBS program yielded positive immediate effects on caregivers' well-being, marginal positive immediate effects on behavioral and psychological symptoms, and long-term effects on meaningful activity engagement among persons living with ADRD. Findings suggest that COPE can be effectively integrated into this service system, an important step towards widespread adoption. CLINICAL TRIALS REGISTRATION NUMBER: NCT02365051.

19.
J Am Geriatr Soc ; 68(5): 1015-1022, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32043561

RESUMO

BACKGROUND/OBJECTIVES: Improving glycemic control in older African Americans with diabetes and mild cognitive impairment (MCI) is important as the population ages and becomes more racially diverse. DESIGN: Randomized controlled trial. SETTING: Recruitment from primary care practices of an urban academic medical center. Community-based treatment delivery. PARTICIPANTS: Older African Americans with MCI, low medication adherence, and poor glycemic control (N = 101). INTERVENTIONS: Occupational therapy (OT) behavioral intervention and diabetes self-management education. MEASUREMENTS: The primary outcome was a reduction in hemoglobin A1c level of at least 0.5% at 6 months, with maintenance effects assessed at 12 months. RESULTS: At 6 months, 25 of 41 (61.0%) OT participants and 22 of 46 (48.2%) diabetes self-management education participants had a reduction in hemoglobin A1c level of at least 0.5%. The model-estimated rates were 58% (95% confidence interval [CI] = 45%-75%) and 48% (95% CI = 36%-64%), respectively (relative risk [RR] = 1.21; 95% CI = 0.84-1.75; P = .31). At 12 months, the respective rates were 21 of 39 (53.8%) OT participants and 24 of 49 (49.0%) diabetes self-management education participants. The model-estimated rates were 50% (95% CI = 37%-68%) and 48% (95% CI = 36%-64%), respectively (RR = 1.05; 95% CI = 0.70-1.57; P = .81). CONCLUSION: Both interventions improved glycemic control in older African Americans with MCI and poor glycemic control. This result reinforces the American Diabetes Association's recommendation to assess cognition in older persons with diabetes and demonstrates the potential to improve glycemic control in this high-risk population. J Am Geriatr Soc 68:1015-1022, 2020.


Assuntos
Terapia Comportamental/métodos , Diabetes Mellitus Tipo 2/terapia , Adesão à Medicação/estatística & dados numéricos , Terapia Ocupacional/métodos , Autogestão/métodos , Negro ou Afro-Americano/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Disfunção Cognitiva/complicações , Diabetes Mellitus Tipo 2/complicações , Feminino , Hemoglobinas Glicadas/metabolismo , Controle Glicêmico/métodos , Humanos , Masculino , Pessoa de Meia-Idade , Método Simples-Cego
20.
J Comp Eff Res ; 8(15): 1327-1341, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31736341

RESUMO

Aim: Evaluating stakeholder engagement can capture what meaningful engagement in research entails, how it develops, and how it is experienced by all collaborators. We conducted a scoping review of recent approaches for evaluating engagement in research and present a descriptive overview of our findings. Methods: We searched peer-reviewed journal articles published worldwide in English between January 2013 and June 2018. Results: Our final sample consisted of 17 articles. Various approaches for evaluating stakeholder engagement were identified including qualitative approaches, surveys and engagement logs. Discussion & conclusion: We identified evaluation approaches that varied in quality, detail and methods. Valid, systematic and inclusive approaches that are developed with research partners and are inclusive of diverse perspectives are an important area for future research.


Assuntos
Pesquisa/organização & administração , Participação dos Interessados , Humanos , Avaliação de Programas e Projetos de Saúde , Reprodutibilidade dos Testes
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