ABSTRACT
PURPOSE OF REVIEW: Many factors influence disease management and glycemic levels in children with type 1 diabetes (T1D). However, these concepts are hard to examine in children using only a qualitative or quantitative research paradigm. Mixed methods research (MMR) offers creative and unique ways to study complex research questions in children and their families. RECENT FINDINGS: A focused, methodological literature review revealed 20 empirical mixed methods research (MMR) studies that included children with T1D and/or their parents/caregivers. These studies were examined and synthesized to elicit themes and trends in MMR. Main themes that emerged included disease management, evaluation of interventions, and support. There were multiple inconsistencies between studies when reporting MMR definitions, rationales, and design. Limited studies use MMR approaches to examine concepts related to children with T1D. Findings from future MMR studies, especially ones that use child-report, may illuminate ways to improve disease management and lead to better glycemic levels and health outcomes.
Subject(s)
Diabetes Mellitus, Type 1 , Humans , Diabetes Mellitus, Type 1/therapy , Caregivers , ParentsABSTRACT
BACKGROUND: Using a validated instrument to measure palliative care (PC) educational needs of health professionals is an important step in understanding how best to educate a well-versed PC workforce within a national health system. The End-of-life Professional Caregiver Survey (EPCS) was developed to measure U.S. interprofessional PC educational needs and has been validated for use in Brazil and China. As part of a larger research project, this study aimed to culturally adapt and psychometrically test the EPCS among physicians, nurses, and social workers practicing in Jamaica. METHODS: Face validation involved expert review of the EPCS with recommendations for linguistic item modifications. Content validation was carried out by six Jamaica-based experts who completed a formal content validity index (CVI) for each EPCS item to ascertain relevancy. Health professionals practicing in Jamaica (n = 180) were recruited using convenience and snowball sampling to complete the updated 25-item EPCS (EPCS-J). Internal consistency reliability was assessed using Cronbach's [Formula: see text] coefficient and McDonald's [Formula: see text]. Construct validity was examined through confirmatory factor analysis (CFA) and exploratory factor analysis (EFA). RESULTS: Content validation led to elimination of three EPCS items based on a CVI < 0.78. Cronbach's [Formula: see text] ranged from 0.83 to 0.91 and McDonald's [Formula: see text] ranged from 0.73 to 0.85 across EPCS-J subscales indicating good internal consistency reliability. The corrected item-total correlation for each EPCS-J item was > 0.30 suggesting good reliability. The CFA demonstrated a three-factor model with acceptable fit indices (RMSEA = 0.08, CFI = 0.88, SRMR = 0.06). The EFA determined a three-factor model had the best model fit, with four items moved into the effective patient care subscale from the other two EPCS-J subscales based on factor loading. CONCLUSIONS: The psychometric properties of the EPCS-J resulted in acceptable levels of reliability and validity indicating that this instrument is suitable for use in measuring interprofessional PC educational needs in Jamaica.
Subject(s)
Caregivers , Humans , Psychometrics/methods , Reproducibility of Results , Jamaica , Surveys and QuestionnairesABSTRACT
The purpose of this study was to develop a model describing the process of how older adults with age-related macular degeneration develop physical activity self-efficacy. The primary aim of this research was to determine how adults with age-related macular degeneration living in a southeastern metropolitan area develop physical activity self-efficacy. Sixteen older adults with age-related macular degeneration participated in face-to-face interviews and observations of their regular physical activity. Grounded theory approach was used to identify emerging themes and a model describing the development of physical activity self-efficacy in this cohort. Five themes related to the development of physical activity self-efficacy emerged: 1) physical activity engagement, 2) self-management behaviors, 3) physical activity determinants, 4) strategies, and 5) self-perceived benefits. These themes were analyzed to produce a preliminary model describing the development of physical activity self-efficacy in older adults with age-related macular degeneration. Findings provide a preliminary model, which practitioners can use to facilitate self-efficacy and participation in physical activity in older adults with age-related macular degeneration.
Subject(s)
Macular Degeneration , Occupational Therapy , Humans , Aged , Self Efficacy , Grounded Theory , Vision Disorders , ExerciseABSTRACT
BACKGROUND: The objective of this study was to assess the feasibility, acceptability, and potential efficacy of ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone-a lay navigator-led, early palliative care telehealth intervention for African American/Black and/or rural-dwelling family caregivers of individuals with advanced cancer (ClinicalTrials.gov identifier NCT03464188). METHODS: This was a pilot randomized trial (November 2019 to March 2021). Family caregivers of patients with newly diagnosed, stage III/IV, solid-tumor cancers were randomized to receive either an intervention or usual care. Intervention caregivers were paired with a specially trained lay navigator who delivered 6 weekly, 20-minute to 60-minute telehealth coaching sessions plus monthly follow-up for 24 weeks, reviewing skills in stress management, self-care, getting help, staying organized, and future planning. Feasibility was assessed according to the completion of sessions and questionnaires (predefined as a completion rate ≥80%). Acceptability was determined through intervention participants' ratings of their likelihood of recommending the intervention. Measures of caregiver distress and quality of life were collected at 8 and 24 weeks. RESULTS: Sixty-three family caregivers were randomized (usual care, n = 32; intervention, n = 31). Caregivers completed 65% of intervention sessions and 87% of questionnaires. Average ratings for recommending the program were 9.4, from 1 (not at all likely) to 10 (extremely likely). Over 24 weeks, the mean ± SE Hospital Anxiety and Depression Scale score improved by 0.30 ± 1.44 points in the intervention group and worsened by 1.99 ± 1.39 points in the usual care group (difference, -2.29; Cohen d, -0.32). The mean between-group difference scores in caregiver quality of life was -1.56 (usual care - intervention; d, -0.07). Similar outcome results were observed for patient participants. CONCLUSIONS: The authors piloted ENABLE Cornerstone, an intervention for African American and rural-dwelling advanced cancer family caregivers. The acceptability of the intervention and data collection rates were high, and the preliminary efficacy for caregiver distress was promising. LAY SUMMARY: To date, very few programs have been developed to support under-resourced cancer family caregivers. To address this need, the authors successfully pilot tested an early palliative care program, called Educate, Nurture, Advise, Before Life Ends (ENABLE) Cornerstone, for African American and rural family caregivers of individuals with advanced cancer. Cornerstone is led by specially trained lay people and involves a series of weekly phone sessions focused on coaching caregivers to manage stress and provide effective support to patients with cancer. The authors are now testing Cornerstone in a larger trial. If the program demonstrates benefit, it may yield a model of caregiver support that could be widely implemented.
Subject(s)
Caregivers , Neoplasms , Black or African American , Humans , Neoplasms/therapy , Palliative Care/methods , Pilot Projects , Quality of LifeABSTRACT
BACKGROUND: Scalable, multiple behavior change interventions are needed to address poor diet, inactivity, and excess adiposity among the rising number of cancer survivors. Efficacy-tested diet (RENEW) and exercise (BEAT Cancer) programs were adapted for web delivery among middle-aged and older cancer survivors for the AMPLIFI study, a National Cancer Institute-funded, multi-site, program project. METHODS: Throughout the continental U.S., survivors of several obesity-related cancers are being recruited for three interconnected randomized controlled trials (RCTs). Projects 1 and 2 test 6-month diet or exercise interventions versus a wait-list control condition. Upon completion of the 6-month study period, the intervention participants receive the next behavior change sequence (i.e., diet receives exercise, exercise receives diet) and the wait-list control arm initiates a 12-month combined diet and exercise intervention. Project 3 tests the efficacy of the sequential versus simultaneous interventions. Assessments occur at baseline and semi-annually for up to 2-years and include: body mass index, health behaviors (diet quality, accelerometry-assessed physical activity/sleep), waist circumference, D3 creatine-assessed muscle mass, physical performance, potential mediators/moderators of treatment efficacy, biomarkers of inflammation and metabolic regulation, health care utilization, cost, and overall health. Four shared resources support AMPLIFI RCTs: 1) Administrative; 2) Adaptation, Dissemination and Implementation; 3) Recruitment and Retention; and 4) Assessment and Analysis. DISCUSSION: Representing a new generation of RCTs, AMPLIFI will exclusively use remote technologies to recruit, intervene and assess the efficacy of the newly-adapted, web-based diet and exercise interventions and determine whether sequential or combined delivery works best for at-risk (older, rural, racial minority) cancer survivors. TRIAL REGISTRATION: ClinicalTrials.gov , NCT04000880 . Registered 27 June 2019.
Subject(s)
Cancer Survivors , Neoplasms , Aged , Humans , Life Style , Middle Aged , Neoplasms/therapy , Obesity/complications , Obesity/therapy , Randomized Controlled Trials as Topic , SurvivorsABSTRACT
OBJECTIVE: Our objective was to obtain perspectives from ovarian cancer patients on job demands, cancer demands, and workplace or cancer resources and strategies to manage the cancer-work interface using the cancer-work management conceptual framework. METHODS: We recruited ovarian cancer patients receiving systemic therapy who screened positive for financial distress using Comprehensive Score for Financial Toxicity <26. Interviews were conducted with participants about their costs of care, including employment concerns. Interviews were recorded, transcribed verbatim, and analyzed by three researchers using an inductive thematic analysis. RESULTS: Of 22 participants, the average age was 57 years old, 36% were Black, 68% had income <$40,000, 41% had public insurance, and 68% were being treated for recurrent disease. Job demands included decreased productivity, inability to return to work, and worry about losing a job or employer-based health insurance coverage. Cancer demands included physical and cognitive limitations due to cancer treatment and reliance on caregivers, especially for transportation. Workplace resources/strategies including having a supportive employer, modifying job responsibilities, and utilizing family medical leave. Cancer care resources/strategies included planning appointments ahead of time and utilizing resources, such as disability. CONCLUSIONS: Cancer care teams should consider screening patients for employment concerns; streamline care to minimize the side effects, time, and transportation demands of treatment on patients and caregivers; maximize utilization of available resources; and proactively communicate with employers to accommodate patients and caregivers who want or need to work.
Subject(s)
Disabled Persons , Ovarian Neoplasms , Carcinoma, Ovarian Epithelial/therapy , Employment/psychology , Female , Humans , Middle Aged , Ovarian Neoplasms/therapy , Qualitative Research , Workplace/psychologyABSTRACT
BACKGROUND: Nephrology research is expanding, and harnessing the much-needed information and data for the practice of evidence-based medicine is becoming more challenging. In this study, we used the natural language processing and text mining approach to mitigate some of these challenges. METHODS: We analyzed 17,412 abstracts from the top-10 nephrology journals over 10 years (2007-2017) by using latent semantic analysis and topic analysis. RESULTS: The analyses revealed 10 distinct topics (T) for nephrology research ranging from basic science studies, using animal modeling (T-1), to dialysis vascular access-related issues -(T-10). The trend analyses indicated that while the majority of topics stayed relatively stable, some of the research topics experienced increasing popularity over time such as studies focusing on mortality and survival (T-4) and Patient-related Outcomes and Perspectives of Clinicians (T-5). However, some research topics such as studies focusing on animal modeling (T-1), predictors of acute kidney injury, and dialysis access (T-10) exhibited a downward trend. CONCLUSION: Stakeholders of nephrology research may use these trends further to develop priorities and enrich the research agenda for the future.
Subject(s)
Biomedical Research , Data Mining , Nephrology , Periodicals as Topic/statistics & numerical data , Publishing/statistics & numerical data , Periodicals as Topic/standardsABSTRACT
AIMS: To reach consensus among experts on global health competencies for baccalaureate nursing students in the USA. DESIGN: A three-round modified Delphi study using a mixed methods research approach. METHODS: In the first round, the original list of competencies (Wilson et al., 2012, Journal of Professional Nursing, 28, 213-222) was revised based on prior research, a review of literature and the Nursing Global Health Competencies Framework developed by the fist author. Nine global health domains and 52 competencies were identified in Round One. In Round Two, two surveys were conducted for validation of the revised list of global health competencies using a group of six nurses with expertise in global health and baccalaureate nursing education, which produced modifications in the competencies used for the third phase of the study. In Round Three, 41 participants completed a survey to rate the extent to which they thought the competencies obtained in Round Two were essential for baccalaureate nursing education in the United States. Data collection took place from May 2017 - January 2018. RESULTS: A group of experts in global health and baccalaureate nursing education from the United States achieved consensus that 40 global health competencies were essential for baccalaureate nursing education in the United States. CONCLUSION AND IMPACT: The domains and competencies derived in this study can be used to guide undergraduate nursing curriculum development in global health and provide a framework for both clinical instruction and evaluation of global health student experiences.
Subject(s)
Clinical Competence/statistics & numerical data , Clinical Competence/standards , Education, Nursing, Baccalaureate/statistics & numerical data , Education, Nursing, Baccalaureate/standards , Faculty, Nursing/statistics & numerical data , Global Health/education , Students, Nursing/statistics & numerical data , Adult , Aged , Delphi Technique , Female , Humans , Male , Middle Aged , Nursing Education Research , United States , Young AdultABSTRACT
AIMS AND OBJECTIVES: To explore how workplace bullying influences nurses' abilities to provide patient care. BACKGROUND: Nurses' experiences of workplace bullying undermine nursing work environments and potentially threaten patient care. Although there is a link between nurses' experiences of workplace bullying and poor patient care, additional exploration is necessary as current evidence remains underdeveloped and inconclusive. DESIGN: Qualitative descriptive study. METHODS: Fifteen inpatient staff nurses who have experienced workplace bullying while working in one hospital located in the southern region of the USA participated in individual, semi-structured interviews. Inductive thematic analysis was used to analyse interview transcripts in NVivo 12 software. The COREQ checklist for qualitative studies has been used in reporting this study. RESULTS: Three themes, and respective subthemes, were generated from data analysis: (a) workplace bullying as part of the nursing work environment, (b) workplace bullying's influence on nurses and (c) workplace bullying's influence on patient care. Workplace bullying was perceived to be inherent in the nursing work environment; nurses felt that they were targets of workplace bullying because (a) they were new nurses, (b) there was an abuse of power, or (c) the nature of the work occasioned it. Nurses were mentally and emotionally influenced by the bullying. Some nurses perceived that workplace bullying did influence their ability to provide patient care; however, others did not. CONCLUSIONS: Organisations must support new nurses and manage relational attributes of the nursing work environment to reduce workplace bullying. Nursing leaders should receive education on fostering and sustaining favourable nursing work environments and be held accountable for behavioural expectations of the organisation. RELEVANCE TO CLINICAL PRACTICE: Understanding how nurses perceive the work environment to influence their experiences of workplace bullying informs the development of organisational interventions to reduce the behaviour. Furthermore, exploring how nurses' experiences of workplace bullying influences their abilities to provide patient care increases our understanding of workplace bullying implications.
Subject(s)
Bullying , Nursing Staff, Hospital , Workplace , Female , Humans , Nurses , Patient Care , Qualitative ResearchABSTRACT
African American (AA) organ donation registration rates fall short of national objectives. The goal of the present study was to utilize data acquired from a quantitative telephone survey to provide information for a future Department of Motorized Vehicles (DMV) intervention to increase AA organ donor registration at the DMV. AAs (n = 20 177) that had visited an Alabama DMV office within a 3-month period were recruited via direct mailing to participate in a quantitative phone survey. Data from 155 respondents that participated in the survey were analyzed. Of those respondents deciding to become a registered organ donor (ROD; n = 122), one-third made that decision at the time of visiting the DMV. Of those who chose not to become a ROD (n = 33), one-third made the decision during the DMV visit. Almost 85% of all participants wanted to learn more about organ donation while waiting at the DMV, preferably via TV messaging (digital signage), with the messaging delivered from organ donors, transplant recipients, and healthcare experts. Altruism, accurate organ donation information, and encouragement from family and friends were the most important educational topics to support AAs becoming a ROD. These data provide a platform to inform future interventions designed to increase AAs becoming a ROD at the DMV.
Subject(s)
Black or African American/psychology , Decision Making , Health Knowledge, Attitudes, Practice/ethnology , Licensure/statistics & numerical data , Organ Transplantation , Tissue Donors/psychology , Adult , Female , Humans , Male , MotivationABSTRACT
The human papillomavirus (HPV) vaccine could assist in reducing the cervical cancer disparity existing between Black and White women. Understanding factors influencing Black maternal intentions to vaccinate their daughter is essential in improving vaccination uptake. However, existing instruments do not comprehensively assess factors (e.g., culture) influencing maternal intentions. This paper describes the development of the Human Papillomavirus Vaccination Survey for Black Mothers with Girls Aged 9 to 12 (HPVS-BM), the first instrument to measure knowledge, attitudes, subjective norms, and cultural beliefs relating to Black maternal intentions to vaccinate their daughters aged 9 to 12 years against HPV. The items and scales were refined using content review by experts, as well as cognitive interviews and pilot testing with target audience participants. The final version of the HPVS-BM was administered to 242 Black mothers with adolescent daughters. Internal reliability was determined using Cronbach's alpha. An a priori hypothetical model was developed to determine convergent and discriminant validity. All scales of the HPVS-BM had an acceptable internal reliability of 0.70 or higher. The intention scale of HPVS-BM was significantly correlated (p < .05) with perceived benefits, perceived barriers, and subjective norms, supporting strong convergent validity. Moderate discriminant construct validity was also demonstrated. Exhibiting good psychometrics, this instrument could be used by healthcare researchers and professionals to develop programs to increase HPV vaccination among Black adolescent females aimed at reducing the racial disparities in cervical cancer. Further psychometric testing of this survey tool for understanding factors influencing maternal intentions is warranted.
Subject(s)
Black or African American/psychology , Health Knowledge, Attitudes, Practice , Mothers/psychology , Papillomavirus Infections/prevention & control , Papillomavirus Vaccines/administration & dosage , Adolescent , Adult , Child , Female , Humans , Mother-Child Relations , Papillomaviridae/isolation & purification , Papillomavirus Infections/epidemiology , Papillomavirus Infections/virology , Perception , Surveys and Questionnaires , Vaccination , Young AdultABSTRACT
With the increase in access to medical information, parents can acquire health information from multiple sources. An understanding of parents' reactions to a newborn infant's diagnosis of sickle cell anemia and how they acquire knowledge can identify parent beliefs and preferences about the process of sickle cell education. This study utilized a sequential exploratory mixed methods design. First, qualitative interviews were conducted with 8 parents of infants with sickle cell anemia to understand the process of health education. Second, quantitative surveys were conducted with 22 other parents to test qualitative findings. Parents of infants with sickle cell anemia expressed a high level of fear at the time of notification of a positive screen. Parents desired an understanding of how to identify acute complications of disease and how sickle cell will alter their child's life. Parents actively sought information at the time they were told their child had sickle cell disease. Sickle cell education should begin at time of notification of positive newborn screening results and address identified parent concerns. Health care providers should build trust with parents and provide them with immediate access to educational materials. Hematologists should work with primary care providers to develop complementary educational programs and resources.
Subject(s)
Anemia, Sickle Cell/psychology , Health Education , Parents/psychology , Bias , Female , Humans , Infant , Infant, Newborn , Male , Qualitative Research , Sample SizeABSTRACT
This study aimed to explore suicide prevention in juvenile detention centers by conducting a case study of one state. Qualitative data from semistructured interviews were synthesized from 10 juvenile detention centers. Analytical techniques included thematic and content analysis and the integration of quantitative information and qualitative themes to illustrate key differences in suicide prevention practices and center characteristics among facilities with varying frequencies of crisis stabilization calls and critical incidents. Although the use of many suicide prevention practices was reported across the sample, the quality with which those practices were implemented was highly variable. The analysis suggests that facilities with higher-quality implementation of suicide prevention practices may have had leaders who acknowledged that their facility plays a role in suicide prevention. Moreover, preliminary evidence suggests that the quality of suicide prevention implementation may be associated with the number of crisis stabilization calls and critical incidents (i.e., variables related to suicidality) a facility experiences. Clear conceptualization of a juvenile detention center's role in suicide prevention may lead to better outcomes in suicide prevention implementation. High-quality implementation may reduce suicidality exhibited by youths in juvenile detention and save lives.
Subject(s)
Juvenile Delinquency , Suicide Prevention , Humans , Adolescent , Juvenile Delinquency/prevention & control , Jails , Qualitative Research , Practice Guidelines as Topic , Evidence-Based Practice , Male , FemaleABSTRACT
BACKGROUND: Surgery is essential for gastrointestinal (GI) cancer treatment. Many patients lack access to surgical care that optimizes outcomes. Scarce availability and/or low accessibility of appropriate resources may be the reason for this, especially in economically disadvantaged areas. This study aimed to investigate providers' and survivors' perspectives on barriers and facilitators to the availability and accessibility of surgical care. METHODS: Semistructured interviews informed by surgical disparities and access-to-care conceptual frameworks with purposively selected GI cancer providers and survivors in Alabama and Mississippi were conducted. Survivors were within 3 years of diagnosis of stage I to III esophageal, pancreatic, or colorectal cancer. Transcripts were analyzed using inductive thematic and content analysis techniques. Intercoder agreement was reached at 90 %. RESULTS: The 27 providers included surgeons (n = 11), medical oncologists (n = 2), radiation oncologists (n = 2), a primary care physician (n = 1), nurses (n = 8), and patient navigators (n = 3). This study included 36 survivors with ages ranging from 44 to 87 years. Of the 36 survivors, 21 (58.3 %) were male, and 11 (30.6 %) identified as Black. Responses were grouped into 3 broad categories: (i) transportation/geographic location, (ii) specialized care/testing, and (iii) patient-/provider-related factors. The barriers included lack and cost of transportation, reluctance to travel because of uneasiness with urban centers, low availability of specialized care, overburdened referral centers, provider-related referral biases, and low health literacy. Facilitators included availability of charitable aid, centralizing multidisciplinary care, and efficient appointment scheduling. CONCLUSION: In the Deep South, barriers and facilitators to the availability and accessibility of GI surgical cancer care were identified at the health system, provider, and patient levels, especially for rural residents. Our data suggest targets for improving the use of surgery in GI cancer care.
Subject(s)
Cancer Survivors , Gastrointestinal Neoplasms , Health Services Accessibility , Humans , Health Services Accessibility/statistics & numerical data , Male , Middle Aged , Female , Aged , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Adult , Aged, 80 and over , Alabama , Gastrointestinal Neoplasms/surgery , Gastrointestinal Neoplasms/psychology , Attitude of Health Personnel , Mississippi , Healthcare Disparities/statistics & numerical data , Surgeons/psychology , Surgeons/statistics & numerical data , Pancreatic Neoplasms/surgery , Patient Navigation/organization & administration , Physicians, Primary Care/psychology , Physicians, Primary Care/statistics & numerical dataABSTRACT
Approximately 80 million inpatient and outpatient surgeries are performed annually in the United States. Widely variable and fragmented perioperative care exposes these surgical patients to lapses in expected standard of care, increases the chance for operational mistakes and accidents, results in unnecessary and potentially detrimental care, needlessly drives up costs, and adversely affects the patient healthcare experience. The American Society of Anesthesiologists and other stakeholders have proposed a more comprehensive model of perioperative care, the Perioperative Surgical Home (PSH), to improve current care of surgical patients and to meet the future demands of increased volume, quality standards, and patient-centered care. To justify implementation of this new healthcare delivery model to surgical colleagues, administrators, and patients and maintain the integrity of evidenced-based practice, the nascent PSH model must be rigorously evaluated. This special article proposes comparative effectiveness research aims or objectives and an optimal study design for the novel PSH model.
Subject(s)
Evidence-Based Practice/statistics & numerical data , Patient Care/statistics & numerical data , Patient Care/standards , Patient-Centered Care/statistics & numerical data , Perioperative Care/statistics & numerical data , Research Design/statistics & numerical data , Research/statistics & numerical data , Cohort Studies , Cost Control , Evidence-Based Practice/economics , Guidelines as Topic , Humans , Models, Organizational , Outcome and Process Assessment, Health Care , Patient Care/economics , Patient Safety , Patient-Centered Care/economics , Perioperative Care/economics , Randomized Controlled Trials as Topic , Reproducibility of Results , Treatment OutcomeABSTRACT
OBJECTIVE: Hydrocephalus is inherently unpredictable. Most parents whose child is diagnosed with hydrocephalus do not anticipate the diagnosis, nor can anyone predict if or when a child's shunt will fail and require emergency surgery. Previous research has shown that children with hydrocephalus and their caregivers experience significant posttraumatic stress symptoms secondary to the diagnosis. This study aims to understand caregiver experiences and needs, identify gaps in resources/support, and determine opportunities to improve care. METHODS: Semistructured interviews were conducted with parent caregivers of children with hydrocephalus to learn about their experiences with the hydrocephalus diagnosis, hospitalizations, surgeries, coping and support, challenges of caring for a child with hydrocephalus, and logistics for a proposed support program. De-identified interviews were audio-recorded, transcribed, and analyzed for themes. RESULTS: Thematic saturation was reached after 17 interviews. Five major themes emerged: 1) coping with the diagnosis, 2) received support, 3) hydrocephalus management, 4) implications for intervention, and 5) psychosocial stressors for caregivers. A top priority was balanced, trustworthy information delivered with compassion and updated throughout the child's life. Caregivers described a variety of coping strategies, but a majority reported a need for support in processing complex emotions and dealing with the uncertainty of their child's hydrocephalus. Most agreed that having a caregiver support network, medical professionals available for referrals and questions, and referrals to support services and therapies would facilitate feeling supported and providing the best care for their children. CONCLUSIONS: Parent caregivers are critical to the health and well-being of children with hydrocephalus, and it is essential to understand their experiences to improve care. Providing well-defined information, psychosocial support, and resources will help to equip parent caregivers to be advocates for their children and to improve both the caregiver and the child's quality of life.
Subject(s)
Caregivers , Hydrocephalus , Child , Humans , Caregivers/psychology , Quality of Life , Parents/psychology , Qualitative ResearchABSTRACT
INTRODUCTION: Female cancer survivors who received gonadotoxic cancer treatment are at risk for profound diminished ovarian reserve and/or primary ovarian insufficiency with resulting infertility, which can be associated with distress and decreased quality of life.. Despite prioritizing future parenthood, many survivors are unsure of the impact of their treatment on their future fertility, and little is known about the perceived reproductive health needs and factors associated with receipt of a fertility status assessment (FSA). There is a lack of developmentally appropriate reproductive health decisional support interventions available for emerging adult cancer survivors. This study will explore the perceived reproductive health needs of emerging adult female survivors of childhood cancer and to identify decisional and contextual factors that influence pursuit of FSA using an explanatory sequential quantitative to qualitative mixed methods design. METHODS AND ANALYSIS: This study will enroll 325 female survivors (aged 18 to 29 years and >1-year post treatment; diagnosed with cancer < age 21 years) from four cancer centers in the United States. Sociodemographic and developmental factors, reproductive knowledge and values, decisional needs, and receipt of an FSA will be assessed through a web-based survey. Informed by survey findings, a subset of participants will be recruited for qualitative interviews to explore decisional factors associated with uptake of an FSA. Clinical data will be abstracted from the medical records. Multivariable logistic regression models will be developed to identify factors associated with FSA and qualitative descriptive analysis will be used to develop themes from the interviews. Quantitative and qualitative findings will be merged using a joint display to develop integrated study conclusions and direct future interventional research.
Subject(s)
Cancer Survivors , Neoplasms , Child , Adult , Female , Humans , Quality of Life , Neoplasms/complications , Neoplasms/therapy , Survivors , FertilityABSTRACT
Objective: To facilitate replication and future intervention design of web-based multibehavior lifestyle interventions, we describe the rationale, development, and content of the AiM, Plan, and act on LIFestYles (AMPLIFY) Survivor Health intervention which provides healthy eating and exercise behavior change support for older cancer survivors. The intervention promotes weight loss, improvements in diet quality, and meeting exercise recommendations. Methods: The Template for Intervention Description and Replication (TIDieR) checklist was used to provide a comprehensive description of the AMPLIFY intervention, consistent with CONSORT recommendations. Results: A social cognitive theory web-based intervention founded on the core components of efficacious print and in-person interventions was conceptualized and developed through an iterative collaboration involving cancer survivors, web design experts, and a multidisciplinary investigative team. The intervention includes the AMPLIFY website, text and/or email messaging, and a private Facebook group. The website consists of: (1) Sessions (weekly interactive e-learning tutorials); (2) My Progress (logging current behavior, receiving feedback, setting goals); (3) Tools (additional information and resources); (4) Support (social support resources, frequently asked questions); and (5) Home page. Algorithms were used to generate fresh content daily and weekly, tailor information, and personalize goal recommendations. An a priori rubric was used to facilitate intervention delivery as healthy eating only (24 weeks), exercise only (24 weeks), or both behaviors concurrently over 48 weeks. Conclusions: Our TIDieR-guided AMPLIFY description provides pragmatic information helpful for researchers designing multibehavior web-based interventions and enhances potential opportunities to improve such interventions.
ABSTRACT
PURPOSE: Learning health systems (LHSs), defined as a systematic process for aligning science, informatics, and clinical practice to integrate providers, researchers, and patients as active participants in an evidence-based care continuum, can provide an ideal environment for academic health centers to rapidly adopt evidence-based guidelines and translate research into practice. However, few LHS frameworks are specifically adapted for academic health centers. The authors wanted to identify the definitions, components, and other features of LHSs to develop an interdisciplinary LHS framework for use within academic health centers. METHOD: The authors conducted a scoping review of the literature to identify definitions, components, and other features of LHSs that are useful to academic health centers. In January 2021, they searched PubMed, Academic Search Premier, and Scopus databases and identified English-language, peer-reviewed articles pertaining to LHS, LHS frameworks, organization, components, and models. Since the phrase learning health system is relatively new terminology, they conducted a supplemental review with alternative phrases, including embedded research and coordinated or collaborative research network . They used the Knowledge to Action (KTA) Framework to integrate the generation and flow of research into practice. RESULTS: The primary review retrieved 719 articles and the supplemental review retrieved 209; of these, 49 articles were retained to synthesize common definitions, components, and other features of LHS frameworks. Seven structural components of LHSs were identified: organization and collaborations, performance, ethics and security, scientific approaches, data, information technology, and patient outcomes. An adapted interdisciplinary LHS framework was developed that incorporated research and learning engines derived from the KTA and adaptations of common components and other features within the reviewed articles to fit the interests of providers, researchers, and patients within academic health centers. CONCLUSIONS: The adapted LHS framework can be used as a dynamic foundation for development and organization of interdisciplinary LHSs within academic health centers.
Subject(s)
Learning Health System , Humans , Interdisciplinary Studies , Knowledge , Learning , OrganizationsABSTRACT
AIM: To provide a systematic review of the literature from 1997 to 2017 on nursing-sensitive indicators. DESIGN: A qualitative design with a deductive approach was used. DATA SOURCES: Original and Grey Literature references from Cochrane Library, Medline/PubMed, Embase, and CINAHL, Google Scholar Original and Grey Literature. REVIEW METHODS: Quality assessment was performed using the NIH Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. RESULTS: A total of 3,633 articles were identified, and thirty-nine studies met the inclusion criteria. The quantitative assessment of investigated relationships in these studies suggests that nursing staffing, mortality, and nosocomial infections were the most frequently reported nursing-sensitive indicators. CONCLUSION: This review provides a comprehensive list of nursing-sensitive indicators, their frequency of use, and the associations between these indicators and various outcome variables. Stakeholders of nursing research may use the findings to streamline the indicator development efforts and standardization of nursing-sensitive indicators. IMPACT: This review provides evidence-based results that health organizations can benefit from nursing care quality.