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BACKGROUND: Midlife Black women (ages 45-64) suffer disproportionately from cardiovascular disease, yet there remains a paucity of programs tailored to this at-risk subpopulation. The Midlife Black Women's Stress and Wellness (B-SWELL) program was codeveloped with community representatives to provide culturally tailored materials and content designed to increase adoption of healthier lifestyle behaviors and improve cardiovascular health. Few reports highlight the methods used to monitor fidelity in community participatory research. OBJECTIVE: The objective of this report is to describe approaches used to ensure fidelity in the B-SWELL feasibility trial. METHODS: A virtual randomized feasibility trial was conducted. Intervention fidelity was evaluated in accordance with Borrelli's five principles of fidelity: design, training, delivery, receipt, and enactment. In addition to rigorous oversight by the research team, tools were developed or adapted for the virtual trial. Tools used in the trial included a Visual Analog Attendee-Engagement Tool, weekly feedback surveys, audio recordings, a facilitator's checklist, an overall satisfaction survey, and a technology survey. RESULTS: Using Borrelli's framework for treatment fidelity, the researchers noted high ratings from the overall satisfaction survey, designed to assess ongoing participant satisfaction with the intervention materials and continued enactment. The tools successfully guided the intervention process from design to enactment. DISCUSSION: Adherence to Borrelli's principles of fidelity enables rigorous oversight of an intervention and its delivery. The growing use of technology to deliver programmed interventions requires that tools be adapted and created to monitor fidelity. Validation of the research-developed and adapted tools is recommended in a larger trial.
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BACKGROUND: Across the globe, family-integrated care (FICare) has become an evidence-based standard in which parents deliver the majority of infant care in the neonatal intensive care unit (NICU). Because of extensive barriers to parent presence, adaptations to FICare may be required for successful implementation. Family management theory may provide structure to the Parent Education of FICare and help nurses guide parents' skill development as equal care members. PURPOSE: To identify family management skills employed by NICU parents using the Self- and Family Management Framework (SFMF). METHODS: We conducted secondary analyses of qualitative interview data from NICU parents (n = 17) who shared their experiences of using family management skills to care for their infant. We categorized skills according to 3 main self- and family management processes: Focusing on Infant Illness Needs; Activating Resources; and Living With Infant Illness. RESULTS: Parents reported several family management skills currently identified in the SFMF, as well as new skills such as conflict management, power brokerage, and addressing resources related to social determinants of health. Parent activation of resources was critical to sustaining parent focus on the infant's illness needs. IMPLICATIONS FOR PRACTICE AND RESEARCH: By teaching skills that parents reported as helping them manage infant care, neonatal nurses may better facilitate parent integration into the care team. Future researchers can incorporate the skills identified in this study into the design of family management interventions that facilitate FICare implementation in the United States.
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Recém-Nascido Prematuro , Unidades de Terapia Intensiva Neonatal , Lactente , Criança , Recém-Nascido , Humanos , Terapia Intensiva Neonatal , Pais/educação , Cuidado do LactenteRESUMO
OBJECTIVES: (1) To iteratively design a web/phone-based intervention to support caregivers of adults acutely following traumatic brain injury (TBI), Caregiver Wellness (CG-Well), and (2) to obtain qualitative and quantitative feedback on CG-Well from experts and caregivers to refine the intervention. SETTING: A level I trauma and tertiary medical center. PARTICIPANTS: Convenience sample of a total of 19 caregivers and 25 experts. DESIGN: Multistep prospective study with iterative changes to CG-Well: (1) developed intervention content based on qualitative feedback from a prior study and literature review; (2) obtained qualitative feedback from 10 experts; (3) refined content using a modified Delphi approach involving 4 caregivers and 6 experts followed by qualitative interviews with 9 caregivers; (4) designed CG-Well website and videos; and (5) obtained feedback on program acceptability, appropriateness, and feasibility from 6 caregivers and 9 experts. INTERVENTIONS: CG-Well included content on TBI, self-care and support, and skill-building strategies delivered through a website and telephone calls. MAIN OUTCOME MEASURES: Qualitative data were analyzed using content analysis. Caregivers and experts completed Likert-type scales to rate module relevance, clarity, accuracy, utility and website acceptability, appropriateness, and feasibility (1 = strongly disagree to 5 = strongly agree). Means and standard deviations (SD) characterized ratings. RESULTS: Qualitative findings were instrumental in designing and refining CG-Well. Ratings were positive for modules (means and SD for relevant [4.9, 0.33], clear [4.6, 0.53], accurate [4.9, 0.33], and useful [5, 0]) and the website (means and SD for acceptable [4.8, 0.36], appropriate [4.8, 0.35], and feasible [4.8, 0.36]). CONCLUSIONS: The iterative design process for CG-Well resulted in a highly acceptable program. An early-stage randomized controlled trial is underway to estimate treatment effects for a future well-powered clinical trial.
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Lesões Encefálicas Traumáticas , Cuidadores , Adulto , Humanos , Estudos Prospectivos , TelefoneRESUMO
Efficient and effective methods of recruiting participants for studies have characteristically come with many challenges. The unprecedented rise of social media platforms such as Facebook and Instagram has revolutionized the ease of recruiting participants as compared to more traditional methods such as newspaper or radio advertisements. While these new advancements may seem to increase the success of recruitment, they are not without their own faults and limitations. In this paper, we intend to dissect the advantages and disadvantages of social media platforms in recruiting participants. Specifically, we will discuss the advantages of targeted and rapid recruitment, engagement, and cost reduction as well as the disadvantages of representativeness, privacy concerns, limited control, and limited access.
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Mídias Sociais , Humanos , Seleção de Pacientes , PrivacidadeRESUMO
OBJECTIVES: Patient-family member dyads experience transitions through illness as an interdependent team. This study measures the association of depression, anxiety, and health-related quality of life (HRQOL) of older adult primary care patient-family member dyads. METHODS: Baseline data from 1,808 patient-family member dyads enrolled in a trial testing early detection of Alzheimer's disease and related dementias in primary care. Actor-Partner Independence Model was used to analyze dyadic relationships between patients' and family members' depression (PHQ-9), anxiety (GAD-7), and HRQOL (SF-36 Physical Component Summary score and Mental Component Summary score). RESULTS: Family member mean (SD) age is 64.2 (13) years; 32.2% male; 84.6% White; and 64.8% being the patient's spouse/partner. Patient mean (SD) age is 73.7 (5.7) years; 47% male; and 85.1% White. For HRQOL, there were significant actor effects for patient and family member depression alone and depression and anxiety together on their own HRQOL (p < 0.001). There were significant partner effects where family member depression combined with anxiety was associated with the patient's physical component summary score of the SF-36 (p = 0.010), and where the family member's anxiety alone was associated with the patient's mental component summary score of the SF-36 (p = 0.031). CONCLUSION: Results from this study reveal that many dyads experience covarying health status (e.g. depression, anxiety) even prior to entering a caregiving situation.
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Stroke family caregiver and dyad literature has expanded over the past few years. The purpose of this review was to build upon 2 prior systematic reviews to critique, analyze, and synthesize the evidence pertaining to the impact of family caregiver and dyad interventions on stroke survivor and family caregiver outcomes. CINAHL, PsychINFO, PubMed, and reference lists were searched from December 1, 2016 through March 31, 2021. Using PRISMA guidelines (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), articles were identified that tested outcomes from stroke family caregiver or dyad interventions that targeted the health or well-being of family caregivers. Data from the articles were abstracted into tables for analysis, then compared with recommendations from the 2 prior systematic reviews. A total of 18 articles met inclusion criteria (10 caregiver interventions; 8 dyad interventions) representing sample sizes ranging from 7 to 349 caregivers or dyads. Most were randomized controlled trials (n=13); 2 were cluster randomized trials; and 3 were single-group quasi-experimental designs. Of the 18 studies, 8 had <50 caregivers or dyads and 5 were small feasibility studies that reported data trends rather than testing for significance. Only 6 studies reported significant survivor outcomes. Eleven studies reported significant caregiver outcomes, the most common being burden. A number of survivor and caregiver outcomes were not significant, or only significant for certain subgroups. The limited number of studies, small sample sizes, and conflicting results, made it difficult to draw firm conclusions regarding the impact of these interventions on outcomes. Based on the available evidence from these 18 studies, recommendations from the 2 prior reviews were generally supported. Well-designed and well-powered randomized controlled clinical trials are still needed to confirm efficacy of stroke family caregiver and dyad interventions.
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Cuidadores , Acidente Vascular Cerebral , Humanos , Acidente Vascular Cerebral/terapia , SobreviventesRESUMO
BACKGROUND: A paucity of studies describes the prevalence of family-centered care (FCC) practices and resources in US neonatal units. PURPOSE: To identify US prevalence of FCC practices and resources and to identify the largest gaps in resource provision. METHODS: Neonatal nurses completed an online survey through national conferences (eg, NANN educational conference), neonatal organization Web sites (eg, NANN research survey), and social media (eg, NANN and NPA Facebook). Nurses provided demographics and the National Perinatal Association Self-Assessment on Comprehensive Family Support, a 61-item checklist of FCC practices and resources from 6 categories: family-centered developmental care, staff education/support, peer support, palliative care, discharge education, and mental health support. RESULTS: Nurses (n = 103) reported lowest resources for Peer Support and Mental Health Support. About a third had a neonatal intensive care unit parent advisory committee (n = 39; 37.9%). Only 43.7% (n = 45) had necessary amenities for families to stay with their infants. Less than a third felt that mental health professionals were adequately staffed to provide counseling to parents (n = 28; 27.5%). Very few nurses had adequate training on providing parents psychological support (n = 16; 15.8%). More than half (n = 58; 56.3%) stated that all staff receive training in family-centered developmental care. Finally, less than half (n = 42; 40.8%) stated that staff see parents as equal members of the care team. IMPLICATIONS FOR PRACTICE: We demonstrate a consistent and widespread lack of training provided to neonatal staff in nearly every aspect of comprehensive FCC support. IMPLICATIONS FOR RESEARCH: Researchers need to identify unit/organizational interventions that increase adoption and implementation of FCC practices and resources.
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Enfermeiros Neonatologistas , Pessoal de Saúde , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Pais/psicologia , Assistência Centrada no PacienteRESUMO
BACKGROUND AND OBJECTIVE: Content validation is an integral part of intervention development and should be established before initiation of trials. In collaboration with a community research advisory board, the objective of this study was to analyze expert ratings and qualitative feedback for the Midlife Black Women's Stress-Reduction Wellness (B-SWELL) intervention materials. METHODS: The B-SWELL intervention is a culturally tailored 8-week intervention designed to lower cardiovascular disease risk in midlife Black women by leveraging stress reduction and promoting the adoption of the American Heart Association's Life's Simple 7 healthy lifestyle behaviors. Using a mixed methods approach, 12 experts consisting of midlife Black women (n = 6), researchers (n = 3), and integrative health specialists (n = 3) rated the B-SWELL materials for content accuracy, topic relevance, stress relevance, cultural appropriateness, feasibility, usefulness, ease of use, and appeal using a 5-point Likert scale (1, strongly disagree, to 5, strongly agree). Qualitative narrative data were integrated with the ratings. RESULTS: Combined expert ratings for the B-SWELL materials were high (range, 4.43-4.66). Group ratings differed, with midlife Black women having the highest mean ratings for both the individual B-SWELL modules and the overall binder (4.71 and 4.97, respectively), followed by researchers (4.56 and 4.73, respectively) and integrative health specialists (4.11 and 4.40, respectively). Qualitative data provided insight into deficiencies, supporting refinements of the B-SWELL materials. CONCLUSIONS: The B-SWELL materials exhibited strong evidence of content and face validity. Researchers and clinicians are encouraged to establish content validity before implementation of culturally appropriate interventions aimed at high-risk populations.
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Promoção da Saúde , Estilo de Vida Saudável , Feminino , Promoção da Saúde/métodos , Humanos , Fatores de RiscoRESUMO
AIMS: To examine the critical role that an academic clinical partnership played in the development and refinement of a family management intervention in the Neonatal Intensive Care Unit (NICU). BACKGROUND: Clinical-academic partnerships enable earlier infusion of implementation science principles into development of evidence-based interventions, yet partners often report difficulty leveraging resources, personnel and expertise to create beneficial outcomes for all. DESIGN: Longitudinal qualitative descriptive design. METHODS: To develop and refine the intervention, designated time was taken during meetings of the NICU's Parent Partnership Council (PPC), a committee comprised of nursing, physician and allied health leadership and former NICU parents. Partnership was also achieved by having bedside clinical nurses, in addition to medical and nursing students, participate as research team members. Qualitative data were collected via email, research team and Council meetings, and informal individual chats with key stakeholders (N = 25) and NICU mothers (N = 22). Qualitative data were analysed deductively using thematic analysis based on MacPhee's partnership logic model and the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) model. The consolidated criteria for reporting qualitative research checklist guided our work. RESULTS: During Council meetings, the clinical-academic nurse, Director of Family-Integrated Care and Council members identified the need for a family management intervention, and worked together to develop and refine PREEMIE PROGRESS. Mothers found the intervention had numerous strengths and perceived a benefit knowing they helped future parents. CONCLUSIONS: This work was only possible by leveraging both the university's technology/research resources and the clinical expertise of the NICU staff and PPC. Co-authored presentations, publications and grant funding continued this NICU's legacy in family-centred care and helped shape the clinical-academic nurse's career. RELEVANCE TO CLINICAL PRACTICE: Clinical-academic partnerships can promote excellence in nursing practice, research and education through swifter knowledge translation and earlier infusion of implementation science principles into the development of evidence-based nursing interventions.
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Recém-Nascido Prematuro , Ciência Translacional Biomédica , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Pais , Pesquisa QualitativaRESUMO
Family caregivers exhibit a wide variety of needs and concerns while providing care to stroke survivors after discharge to the home setting. We report the results of two related studies utilizing a multimethod design in which stroke family caregivers (N = 12; N = 10) were interviewed using open-ended questions, followed by written caregiver ratings regarding the types of telehealth technologies they preferred for the telephone assessment and skill-building kit (TASK III). Qualitative data were analyzed using content analysis procedures with a provisional "start list" of codes in a matrix template based on the types of telehealth technologies in the rating forms. Descriptive statistics were used to analyze ratings with response scales ranging from 1 = strongly disagree to 5 = strongly agree. Average ratings for the telehealth technologies for the TASK III resource guide were obtained for the mailed hard copy binder (M = 3.58-4.13; SD = 0.35-1.00), an interactive website (https://www.task3web.com/; M = 3.86-4.17; SD = .72-1.07), an eBook (M = 3.17-3.67; SD = 0.84-1.17), and a USB drive (M = 3.75-4.00; SD = .82-.96). Average ratings for the telehealth technologies for the TASK III calls with the nurse were obtained for the use of a telephone (M = 4.36-5.00; SD = 0.00-0.89), FaceTime on an iOS device (e.g., iPhone or iPad; M = 3.73-4.40; SD = 0.79-0.98), or online videoconferencing (M = 3.17-3.50; SD = 0.82-1.47). Qualitative data revealed a wide variety of preferences for each type of telehealth technology, with advantages and disadvantages of each. The findings underscored the importance of offering multiple telehealth technology options to stroke family caregivers. Future studies are recommended that employ randomized control trial methodology to test theoretically-based interventions that are based on stroke family caregiver preferences for telehealth technologies.
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Cuidadores/psicologia , Entrevistas como Assunto/métodos , Habilidades Sociais , Acidente Vascular Cerebral/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores/estatística & dados numéricos , Feminino , Humanos , Entrevistas como Assunto/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Acidente Vascular Cerebral/terapiaRESUMO
OBJECTIVES: Survivors of moderate and severe traumatic brain injury (TBI) require substantial care, much of which is ultimately provided by friends and family. We sought to describe the unmet needs of informal caregivers. DESIGN: Qualitative, semistructured interviews with informal caregivers of moderate and severe TBI survivors were conducted 72 hours, 1 month, 3 months, and 6 months after injury. SETTING: Intensive care unit of a level 1 trauma center. PARTICIPANTS: Informal caregivers were friends or family who planned to provide care for the patient. Patients were 18 years or older with a moderate to severe TBI, and not expected to imminently die of their injuries. MEASUREMENTS AND MAIN RESULTS: Eighteen patient-caregiver dyads were enrolled. Fifty-three interviews with caregivers were completed and analyzed over the course of 6 months. Three themes were identified in the qualitative analysis: caregiver burden, caregiver health-related quality of life, and caregiver needs for information and support. CONCLUSIONS: This study provides new information about the experience of informal caregivers during the 6 months after their friend or family member survived a moderate to severe TBI. Interventions to promote caregiving may be a substantial opportunity to improve patient-centered outcomes following TBI.
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Lesões Encefálicas Traumáticas , Cuidadores , Lesões Encefálicas Traumáticas/diagnóstico , Lesões Encefálicas Traumáticas/terapia , Família , Humanos , Unidades de Terapia Intensiva , Qualidade de VidaRESUMO
A strong interpersonal relationship after stroke is important for the well-being of survivors and family caregivers. However, as many as 54% of families experience relationship problems after stroke and as many as 38% of couples experience overt conflict. The purpose of this study is to enhance understanding about relationship challenges among stroke dyads and to identify implications for direct practice in social work. Semi-structured interviews were conducted with N = 19 care dyads. Qualitative data were analyzed through an interpretive description lens. Seven themes about relationship challenges were identified. Findings highlight areas to consider in promoting strong relationships between survivors and family caregivers. Social workers may have the opportunity to assist dyads with disrupting negative communication cycles, strengthening empathy and collaboration, and achieving a balance so that each person's needs are met.
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Cuidadores/psicologia , Relações Interpessoais , Acidente Vascular Cerebral/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Sobrecarga do Cuidador , Cognição , Comunicação , Comportamento Cooperativo , Empatia , Relações Familiares , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Desempenho Físico Funcional , Pesquisa Qualitativa , Serviço Social/organização & administração , Fatores Socioeconômicos , Estados UnidosRESUMO
INTRODUCTION: In a recent report, the American Heart Association estimated that medical costs and productivity losses of cardiovascular disease (CVD) are expected to grow from $555 billion in 2015 to $1.1 trillion in 2035. Although the burden is significant, the estimate does not include the costs of family, informal, or unpaid caregiving provided to patients with CVD. In this analysis, we estimated projections of costs of informal caregiving attributable to CVD for 2015 to 2035. METHODS: We used data from the 2014 Health and Retirement Survey to estimate hours of informal caregiving for individuals with CVD by age/sex/race using a zero-inflated binomial model and controlling for sociodemographic factors and health conditions. Costs of informal caregiving were estimated separately for hypertension, coronary heart disease, heart failure, stroke, and other heart disease. We analyzed data from a nationally representative sample of 16 731 noninstitutionalized adults ≥54 years of age. The value of caregiving hours was monetized by the use of home health aide workers' wages. The per-person costs were multiplied by census population counts to estimate nation-level costs and to be consistent with other American Heart Association analyses of burden of CVD, and the costs were projected from 2015 through 2035, assuming that within each age/sex/racial group, CVD prevalence and caregiving hours remain constant. RESULTS: The costs of informal caregiving for patients with CVD were estimated to be $61 billion in 2015 and are projected to increase to $128 billion in 2035. Costs of informal caregiving of patients with stroke constitute more than half of the total costs of CVD informal caregiving ($31 billion in 2015 and $66 billion in 2035). By age, costs are the highest among those 65 to 79 years of age in 2015 but are expected to be surpassed by costs among those ≥80 years of age by 2035. Costs of informal caregiving for patients with CVD represent an additional 11% of medical and productivity costs attributable to CVD. CONCLUSIONS: The burden of informal caregiving for patients with CVD is significant; accounting for these costs increases total CVD costs to $616 billion in 2015 and $1.2 trillion in 2035. These estimates have important research and policy implications, and they may be used to guide policy development to reduce the burden of CVD on patients and their caregivers.
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Doenças Cardiovasculares/economia , Doenças Cardiovasculares/terapia , Cuidadores/economia , Cuidadores/tendências , Custos de Cuidados de Saúde/tendências , Idoso , Idoso de 80 Anos ou mais , American Heart Association , Doenças Cardiovasculares/diagnóstico , Doenças Cardiovasculares/epidemiologia , Efeitos Psicossociais da Doença , Feminino , Previsões , Pesquisas sobre Atenção à Saúde , Gastos em Saúde/tendências , Necessidades e Demandas de Serviços de Saúde/economia , Necessidades e Demandas de Serviços de Saúde/tendências , Humanos , Renda/tendências , Masculino , Pessoa de Meia-Idade , Modelos Econômicos , Avaliação das Necessidades/economia , Avaliação das Necessidades/tendências , Prevalência , Fatores de Tempo , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: A clinically practical, brief, user-friendly, multi-domain self-report and caregiver-report tool is needed for tracking actionable symptoms in primary care for elderly patients with multiple chronic conditions (MCCs). OBJECTIVE: Develop and assess usability, administration time, and internal reliability of SymTrak. DESIGN AND PARTICIPANTS: Phase I: legacy instruments, content validity, analyses of existing data, focus groups (physicians, nurses, patients, informal caregivers), and Think Aloud interviews (patients, caregivers) were used to develop SymTrak. Phase II (pilot feasibility study): 81 (27 patient-caregiver dyads, 27 patients without an identified caregiver) participants were self-administered SymTrak in clinic. MAIN MEASURES: SymTrak and demographic questions. KEY RESULTS: Consistent themes emerged from phase I focus groups. Ambiguous wording was corrected with Think Aloud feedback. In phase II, patients and caregivers preferred circling words instead of numbers for item response options. SymTrak self-administration completion time in clinic was brief; mean was 2.4, 3.0, and 3.3 min for the finalized circlingwords version, respectively, for caregivers, dyadic patients, and patients without a caregiver; and the maximum was 6.2 min for any participant. Usability questionnaire ratings were high. Cronbach's alpha for the SymTrak 23-item total score was 0.86, 0.79, and 0.81 for caregivers, dyadic patients, and patients without a caregiver, respectively. CONCLUSIONS: SymTrak demonstrates content validity, positive qualitative findings, high perceived usability, brief self-administered completion time, and good internal reliability.
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Cuidadores/tendências , Grupos Focais/métodos , Atenção Primária à Saúde/métodos , Atenção Primária à Saúde/tendências , Psicometria/métodos , Psicometria/tendências , Idoso , Idoso de 80 Anos ou mais , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Reprodutibilidade dos Testes , AutorrelatoRESUMO
BACKGROUND: A reliable and valid clinically practical multi-domain self-report and caregiver-report tool is needed for tracking actionable symptoms in primary care for elderly patients with multiple chronic conditions (MCCs). OBJECTIVE: Assess internal consistency reliability, test-retest reliability, construct validity, and sensitivity to change for SymTrak. DESIGN AND PARTICIPANTS: Among 600 (200 patient-caregiver dyads, 200 patients without an identified caregiver) participants, SymTrak was telephone interviewer-administered at baseline and 3-month follow-up, and at 24 h post-baseline for assessing test-retest reliability in a random subsample of 180 (60 dyads, 60 individual patients) participants. MAIN MEASURES: Demographic questions, SymTrak, Health Utility Index Mark 3 (HUI3). KEY RESULTS: Exploratory factor analysis indicated a single dominant dimension for SymTrak items for both patients and caregivers. Coefficient alpha and 24-h test-retest reliability, respectively, were high for the 23-item SymTrak total score for both patient-reported (0.85; 0.87) and caregiver-reported (0.86; 0.91) scores. Construct validity was supported by monotone decreasing relationships between the mean of SymTrak total scores across the poor-to-excellent categories of physical and emotional general health, and by high correlations with HUI3 overall utility score, even after adjusting for demographic covariates (standardized linear regression coefficient = - 0.84 for patients; - 0.70 for caregivers). Three-month change in the SymTrak total score was sensitive to detecting criterion standard 3-month reliable change categories (Improved, Stable, Declined) in HUI3-based health-related quality of life, especially for caregiver-reported scores. CONCLUSIONS: SymTrak demonstrates good internal consistency and test-retest reliability, construct validity, and sensitivity to change over a 3-month period, supporting its use for monitoring symptoms for older adults with MCCs.
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Cuidadores/normas , Entrevistas como Assunto/normas , Múltiplas Afecções Crônicas/epidemiologia , Autorrelato/normas , Idoso , Idoso de 80 Anos ou mais , Cuidadores/psicologia , Feminino , Seguimentos , Humanos , Entrevistas como Assunto/métodos , Masculino , Pessoa de Meia-Idade , Múltiplas Afecções Crônicas/psicologia , Reprodutibilidade dos TestesRESUMO
OBJECTIVE: To characterize the indications, timing, barriers, and perceived value of rehabilitation currently provided for individuals with moderate or severe traumatic brain injury (TBI) admitted to the intensive care unit (ICU) based on the perspectives of providers who work in the ICU setting. PARTICIPANTS: Members (n = 66) of the Neurocritical Care Society and the American Congress of Rehabilitation Medicine. DESIGN: An anonymous electronic survey of the timing of rehabilitation for patients with TBI in the ICU. MAIN MEASURES: Questions asked about type and timing of rehabilitation in the ICU, extent of family involvement, participation of physiatrists in patient care, and barriers to early rehabilitation. RESULTS: Sixty-six respondents who reported caring for patients with TBI in the ICU completed the survey; 98% recommended rehabilitative care while patients were in the ICU. Common reasons to wait for the initiation of physical therapy and occupational therapy were normalization of intracranial pressure (86% and 89%) and hemodynamic stability (66% and 69%). CONCLUSIONS: The majority of providers caring for patients with TBI in the ICU support rehabilitation efforts, typically after a patient is extubated, intracranial pressure has normalized, and the patient is hemodynamically stable. Our findings describe current practice; future studies can be designed to determine optimal timing, intensity, and patient selection for early rehabilitation.
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Lesões Encefálicas Traumáticas/reabilitação , Tomada de Decisão Clínica , Hospitalização , Unidades de Terapia Intensiva , Equipe de Assistência ao Paciente , Hemodinâmica , Humanos , Pressão Intracraniana , Terapia Ocupacional , Modalidades de Fisioterapia , Fonoterapia , Inquéritos e Questionários , Tempo para o TratamentoRESUMO
BACKGROUND: Midlife black women are at a high risk for cardiovascular disease and experience higher morbidity and mortality rates. Chronic life stress contributes to the existent cardiovascular-related disparities for midlife black women. OBJECTIVES: The purpose of this qualitative study was to describe stress reduction strategies relevant to midlife black women, identify barriers, and generate ideas for the development of a stress reduction wellness intervention for midlife black women. METHODS: A community advisory board consisting of 11 midlife black women from the Midwest was established and charged with exploring life stress and stress-related issues for women like themselves. The community advisory board was led through a series of focus group discussions using open-ended questions focused on stress reduction strategies used by midlife black women, what kept them from incorporating stress reduction strategies into their daily routines, and what would be helpful in a stress reduction routine. Discussions were audiotaped, transcribed, coded, and analyzed using content analysis. RESULTS: Stress reduction strategies identified included exercise, faith and prayer, self-care, sisterhood, volunteerism, and mindfulness. Barriers to adopting stress reduction behaviors included time, finances, physical limitations, health status, health insurance, and guilt. Suggested modes of delivery for an intervention included informative lectures and coaching, demonstration, team sessions, social media, and continued access. CONCLUSIONS: Findings from this study were consistent with those from a preliminary study focused on midlife black women from the West Coast. Recommendations will inform development of a stress reduction wellness intervention for midlife black women.
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Doenças Cardiovasculares/etiologia , Doenças Cardiovasculares/prevenção & controle , Estresse Psicológico/complicações , Negro ou Afro-Americano , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Fatores de RiscoRESUMO
PurposeNeuroprotective developmental care is paramount for neonates with CHD. Although several developmental care scales exist, either they have not been psychometrically tested or were not designed for the needs of neonates with CHD. The purpose of this study is to describe item development and content validity testing of the developmental care scale for neonates with CHD, which measures five domains of the developmental care provided by bedside nurses to neonates in the cardiac ICU: sleep, pain and stress management, activities of daily living, family-centred care, and environment. METHODS: For this cross-sectional study, items were developed based on clinical expertise and the core measures for developmental care. In this study, seven experts provided content validity ratings of items for total scale and subscale fit and relevance. A content validity index was used to determine item retention. Item modifications and additions were based on expert feedback. RESULTS: Expert ratings provided evidence of content validity on 24 of 53 items within the five domains of developmental care. A total of 24 items were deleted, and five items with low content validity ratings were retained, because of conceptual importance, and revised. An additional 11 items were added based on expert qualitative feedback. CONCLUSIONS: This study provided evidence of content validity of the developmental care scale for neonates with CHD by researchers and bedside nurses caring for these neonates. Further psychometric testing is warranted to provide evidence of internal consistency reliability, construct validity, and to identify variables that influence quality of the developmental care.
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Desenvolvimento Infantil , Cardiopatias Congênitas/terapia , Terapia Intensiva Neonatal/métodos , Atividades Cotidianas , Estudos Transversais , Feminino , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal/organização & administração , Masculino , Relações Profissional-Família , PsicometriaRESUMO
PURPOSE: Developmental care of neonates with CHD is essential for proper neurodevelopment. Measurement of developmental care specific to these neonates is needed to ensure consistent implementation within and across cardiac ICUs. The purpose of this study was to psychometrically test the Developmental Care Scale for Neonates with Congenital Heart Disease, which measures the quality of developmental care provided by bedside nurses to neonates in the cardiac ICU. METHODS: Psychometric testing was conducted with 119 cardiac ICU nurses to provide evidence of internal consistency reliability and construct validity. Participants were predominantly young (median = 32 years), white (90%) females (93%) with bachelor's degrees (78%) and a median experience in the cardiac ICU of 7 years. RESULTS: Evidence of internal consistency reliability (α =.89) was provided with corrected item-total correlations ranging from .31 to .77. Exploratory factor analysis provided evidence of construct validity as a unidimensional scale, as well as a multidimensional scale consisting of four subscales: creating the external environment, assessment of family well-being, caregiver activities toward the neonate, and basic human needs. CONCLUSIONS: Evidence of reliability and validity of the 31-item Developmental Care Scale for Neonates with Congenital Heart Disease was established with nurses caring for neonates in the cardiac ICU. This instrument will serve as a valuable outcome measure tasked with improving developmental care performance and makes it possible to identify relationships between developmental care performance and neonatal neurodevelopmental outcomes in future research.
Assuntos
Cuidadores , Cardiopatias Congênitas/diagnóstico , Terapia Intensiva Neonatal/métodos , Psicometria/métodos , Adulto , Idoso , Feminino , Cardiopatias Congênitas/terapia , Humanos , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto JovemRESUMO
OBJECTIVE: To describe and synthesize the literature on adult traumatic brain injury (TBI) family caregiver and dyad intervention. TBI is a common injury that has a significant long-term impact, and is sometimes even characterized as a chronic condition. Informal (ie, unpaid) family caregivers of adults with TBI experience high rates of burnout, depression, fatigue, anxiety, lower subjective well-being, and poorer levels of physical health compared to noncaregivers. This study addresses the critical gap in the understanding of interventions designed to address the impact of TBI on adult patients and their family caregivers. DATA SOURCES: PubMed and MEDLINE. STUDY SELECTION: Studies selected for review had to be written in English and be quasi-experimental or experimental in design, report on TBI caregivers, survivors with heavy involvement of caregivers, or caregiver dyads, involve moderate and severe TBI, and describe an intervention implemented during some portion of the TBI care continuum. DATA EXTRACTION: The search identified 2171 articles, of which 14 met our criteria for inclusion. Of the identified studies, 10 were randomized clinical trials and 4 were nonrandomized quasi-experimental studies. A secondary search to describe studies that included individuals with other forms of acquired brain injury in addition to TBI resulted in 852 additional titles, of which 5 met our inclusion criteria. DATA SYNTHESIS: Interventions that targeted the caregiver primarily were more likely to provide benefit than those that targeted caregiver/survivor dyad or the survivor only. Many of the studies were limited by poor fidelity, low sample sizes, and high risk for bias based on randomization techniques. CONCLUSIONS: Future studies of TBI caregivers should enroll a more generalizable number of participants and ensure adequate fidelity to properly compare interventions.