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1.
J Pain Symptom Manage ; 60(1): 28-36.e1, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32058011

RESUMO

CONTEXT: Health care professionals (HCPs) currently judge pain presence and intensity in patients with delirium despite the lack of a valid, standardized assessment protocol. However, little is known about how they make these judgments. This information is essential to develop a valid and reliable assessment tool. OBJECTIVES: To identify pain cues that HCPs report to judge pain in patients with delirium and to examine whether the pain cues differed based on patient cognitive status and delirium subtype. METHODS: Mixed qualitative-quantitative design. Doctors and nurses were recruited. All participants provided written informed consent, and before the recorded interview, demographic information was collected; then participants were asked to describe their practices and beliefs regarding pain assessment and management with older patients who are cognitively intact and patients with delirium. Interviews were transcribed verbatim and coded for pain cues. Coded data were imported into SPSS software (IBM SPSS Statistics Version 24; IBM Corporation, Armonk, NY) to conduct bivariate analyses. RESULTS: The pain cue self-report was stated more often for intact than for delirium patients (χ2 [1; N = 106] = 22.56; P < 0.001). HCPs stated yelling (χ2 [2; N = 159] = 11.14; P = 0.004), when describing pain in hyperactive than in hypoactive and mixed delirium patients; and significantly more HCPs stated grimace (χ2 [2; N = 159] = 6.88; P = 0.03), when describing pain in hypoactive than hyperactive and mixed patients. CONCLUSION: This study outlines how HCPs conduct pain assessment in patients who are delirious and, also, identifies pain behavior profiles for the subtypes of delirium.


Assuntos
Dor do Câncer , Delírio , Neoplasias , Idoso , Sinais (Psicologia) , Delírio/diagnóstico , Pessoal de Saúde , Humanos , Neoplasias/complicações , Agitação Psicomotora
2.
Cancer Nurs ; 43(2): 147-157, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-30950931

RESUMO

BACKGROUND: Parents are confronted with a range of direct costs and intense caregiving demands following their child's cancer diagnosis, which may potentially threaten the financial stability of the family. OBJECTIVE: The aims of this study were to explore the financial impact of a new childhood cancer diagnosis on families and understand the strategies families use to manage these financial impacts. METHODS: As part of the mixed-methods Childhood Cancer Cost Study, a descriptive qualitative design was conducted. Parents discussed costs and their impact in a semistructured, audio-taped interview. A qualitative content analysis was used to analyze the transcribed data. RESULTS: Seventy-eight parents participated. Parents used several strategies to maintain financial stability. These strategies consisted of managing expenses, which entailed reducing living expenses and cutting unexpected cancer costs. Efforts to absorb these expenses required families to increase their debt while seeking ways to tap into available resources, including relying on their savings and leveraging their benefits and assets, increasing their paid work hours, relying on their support networks, and seeking help from philanthropy and government agencies for financial help. CONCLUSION: Parents used several strategies to manage the increased out-of-pocket expenses and reduced household income. IMPLICATIONS FOR PRACTICE: Our findings of the financial impact of cancer costs on families provide insight into needed practice and policy changes aimed at lessening the economic impact of a childhood cancer diagnosis on the family and allow healthcare professionals and researchers to pursue more in-depth cost assessments in the future.


Assuntos
Efeitos Psicossociais da Doença , Neoplasias/economia , Pais/psicologia , Adulto , Criança , Feminino , Gastos em Saúde/estatística & dados numéricos , Humanos , Renda/estatística & dados numéricos , Masculino , Neoplasias/terapia , Pesquisa Qualitativa
3.
JMIR Mhealth Uhealth ; 6(4): e80, 2018 Apr 06.
Artigo em Inglês | MEDLINE | ID: mdl-29625951

RESUMO

BACKGROUND: Pain in adolescents with cancer is common and negatively impacts health-related quality of life. The Pain Squad+ smartphone app, capable of providing adolescents with real-time pain management support, was developed to enhance pain management using a phased approach (ie, systematic review, consensus conference and vetting, iterative usability testing cycles). A 28-day Pain Squad+ pilot was conducted with 40 adolescents with cancer to evaluate the feasibility of implementing the app in a future clinical trial and to obtain estimates of treatment effect. OBJECTIVE: The objective of our nested qualitative study was to elucidate the perceptions of adolescents with cancer to determine the acceptability and perceived helpfulness of Pain Squad+, suggestions for app improvement, and satisfaction with the pilot study protocol. METHODS: Post pilot study participation, telephone-based, semistructured, and audio-recorded exit interviews were conducted with 20 adolescents with cancer (12-18 years). All interviews were transcribed and independently coded by 2 study team members. Content analysis was conducted to identify data categories and overarching themes. RESULTS: Five major themes comprising multiple categories and codes emerged. These themes focused on the acceptability of the intervention, acceptability of the study, the perceived active ingredients of the intervention, the suitability of the intervention to adolescents' lives, and recommendations for intervention improvement. CONCLUSIONS: Overall, Pain Squad+ and the pilot study protocol were acceptable to adolescents with cancer. Suggestions for intervention and study improvements will be incorporated into the design of a future randomized clinical trial (RCT) aimed at assessing the effectiveness of Pain Squad+ on adolescents with cancer health outcomes.

4.
BMC Pediatr ; 18(1): 85, 2018 02 23.
Artigo em Inglês | MEDLINE | ID: mdl-29475433

RESUMO

BACKGROUND: Orally administered sucrose is effective and safe in reducing pain intensity during single, tissue-damaging procedures in neonates, and is commonly recommended in neonatal pain guidelines. However, there is wide variability in sucrose doses examined in research, and more than a 20-fold variation across neonatal care settings. The aim of this study was to determine the minimally effective dose of 24% sucrose for reducing pain in hospitalized neonates undergoing a single skin-breaking heel lance procedure. METHODS: A total of 245 neonates from 4 Canadian tertiary neonatal intensive care units (NICUs), born between 24 and 42 weeks gestational age (GA), were prospectively randomized to receive one of three doses of 24% sucrose, plus non-nutritive sucking/pacifier, 2 min before a routine heel lance: 0.1 ml (Group 1; n = 81), 0.5 ml (Group 2; n = 81), or 1.0 ml (Group 3; n = 83). The primary outcome was pain intensity measured at 30 and 60 s following the heel lance, using the Premature Infant Pain Profile-Revised (PIPP-R). The secondary outcome was the incidence of adverse events. Analysis of covariance models, adjusting for GA and study site examined between group differences in pain intensity across intervention groups. RESULTS: There was no difference in mean pain intensity PIPP-R scores between treatment groups at 30 s (P = .97) and 60 s (P = .93); however, pain was not fully eliminated during the heel lance procedure. There were 5 reported adverse events among 5/245 (2.0%) neonates, with no significant differences in the proportion of events by sucrose dose (P = .62). All events resolved spontaneously without medical intervention. CONCLUSIONS: The minimally effective dose of 24% sucrose required to treat pain associated with a single heel lance in neonates was 0.1 ml. Further evaluation regarding the sustained effectiveness of this dose in reducing pain intensity in neonates for repeated painful procedures is warranted. TRIAL REGISTRATION: ClinicalTrials.gov : NCT02134873. Date: May 5, 2014 (retrospectively registered).


Assuntos
Analgésicos/administração & dosagem , Dor Processual/tratamento farmacológico , Sacarose/administração & dosagem , Administração Oral , Analgésicos/uso terapêutico , Relação Dose-Resposta a Droga , Feminino , Humanos , Recém-Nascido , Masculino , Medição da Dor , Dor Processual/diagnóstico , Estudos Prospectivos , Método Simples-Cego , Sacarose/uso terapêutico , Resultado do Tratamento
5.
J Pediatr Oncol Nurs ; 35(2): 118-131, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29192538

RESUMO

Families of children with cancer are confronted with unexpected out-of-pocket expenses and productivity costs associated with the diagnosis. One productivity cost that falls on children is the impact of cancer on children's school attendance, performance, and activities (eg, play, friendships, and socialization). Nested within the Childhood Cancer Cost Study, this qualitative descriptive study used convenience sampling to recruit and interview parents of children newly diagnosed with cancer. Content analysis techniques were used to inductively descriptive the semistructured interview data. Sixty-six parents of 65 children with cancer and of 73 siblings participated. The most commonly reported productivity loss in children with cancer was school absenteeism mainly due to cancer treatment. Children fell behind their classmates academically and lost important social time with peers. A few siblings also fell behind their peers primarily due to limited parental attention. Parents adopted various strategies to lessen the impact of the diagnosis on their children's school attendance, performance, and activities. Providing parents with additional resources and support may optimize their children's academic and social reintegration into school.


Assuntos
Absenteísmo , Efeitos Psicossociais da Doença , Neoplasias/psicologia , Pais , Instituições Acadêmicas , Irmãos , Adolescente , Adulto , Canadá , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/enfermagem , Enfermagem Oncológica , Enfermagem Pediátrica , Leucemia-Linfoma Linfoblástico de Células Precursoras/enfermagem , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Pesquisa Qualitativa , Serviços de Enfermagem Escolar , Adulto Jovem
6.
J Pediatr Oncol Nurs ; 34(4): 283-294, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28376666

RESUMO

PURPOSE: A user-centered design approach was used to refine the mHealth Pain Squad+ real-time pain self-management app for adolescents with cancer for its usability (defined as being easy to use, easy to understand, efficient to complete, and acceptable). METHOD: Three iterative usability testing cycles involving adolescent observation and interview were used to achieve this objective. During each cycle, adolescents used the app while "thinking aloud" about issues encountered. Observed difficulties and errors were recorded and a semistructured interview about the experience was conducted. Using a qualitative conventional content analysis approach, themes related to app usability were identified. RESULTS: Participants required an average of 4.3 minutes to complete the pain assessment component of Pain Squad+. Overall, the app was acceptable. Problematic issues related to software malfunction, interface design flaws, and confusing text. Software revisions were made to address each issue. CONCLUSION: The multifaceted usability approach used provided insight into how a real-time app can be made acceptable to adolescents with cancer and succeeded in developing a Pain Squad+ app that is fit for future effectiveness testing.


Assuntos
Comportamento do Adolescente , Neoplasias/psicologia , Medição da Dor/instrumentação , Dor Intratável/prevenção & controle , Autocuidado , Smartphone , Interface Usuário-Computador , Adolescente , Criança , Humanos , Neoplasias/enfermagem , Medição da Dor/métodos , Dor Intratável/enfermagem , Enfermagem Pediátrica
7.
Pediatr Blood Cancer ; 64(10)2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28423223

RESUMO

BACKGROUND: Pain in adolescents with cancer (12-18 years) is common and negatively impacts health-related quality of life (HRQL). The Pain Squad+ smartphone app, which provides adolescents with real-time pain self-management support, was developed to address this issue. This study evaluated the implementation of the app to inform a future randomized controlled trial (RCT) and obtain treatment effect estimates for pain intensity, pain interference, HRQL, and self-efficacy. PROCEDURE: A one-group baseline/poststudy design with 40 adolescents recruited from two pediatric tertiary care centers was used. Baseline questionnaires were completed and adolescents used the app at least twice daily for 28 days, receiving algorithm-informed self-management advice depending on their reported pain. A nurse received alerts in response to sustained pain and contacted adolescents to assist in pain care. Poststudy questionnaires were completed. Descriptive analyses, with exploratory inferential testing conducted on health outcome data, were used to address study aims. RESULTS: Most (40/52; 77%) eligible adolescents participated. Two participants withdrew participation. Intervention fidelity was impacted by technical difficulties (occurring for 15% of participants) and a prolonged time for nurse contact in the event of sustained pain. Adherence to pain reporting was 68.8 ± 38.1%. Outcome measure completion rates were high and the intervention was acceptable to participants. Trends in improvements in pain intensity, pain interference, and HRQL were significant, with effect sizes of 0.23-0.67. CONCLUSIONS: Implementation of Pain Squad+ is feasible and the app appears to improve pain-related outcomes for adolescents with cancer. A multicenter RCT will be undertaken to examine app effectiveness.


Assuntos
Algoritmos , Aplicativos Móveis , Neoplasias , Manejo da Dor , Dor , Autocuidado , Smartphone , Adolescente , Criança , Feminino , Humanos , Masculino , Manejo da Dor/instrumentação , Manejo da Dor/métodos , Projetos Piloto , Autocuidado/instrumentação , Autocuidado/métodos
8.
Am J Hosp Palliat Care ; 34(10): 958-965, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28273749

RESUMO

Delirium complicates pain assessment and management in advanced cancer. This retrospective cohort study compared health-care workers' (HCWs) cancer pain judgments between older patients with advanced cancer with and without a diagnosis of delirium. We reviewed HCWs' daily chart notations about pain presence and good pain control in 149 inpatients with advanced cancer, ≥65 years of age, admitted to a palliative care inpatient unit. Any day with 1 or more notations of pain presence was counted as 1 day with pain; days with notation(s) indicating good pain control were similarly counted. Proportions of days that HCWs judged inpatients to have pain and good pain control were calculated. Patients with and without a delirium diagnosis were compared on both pain outcomes. The moderating effect of highest analgesic class administered was examined. Although most patients received opioid analgesics, mean proportions of days with judged pain were high (39%-60%) and mean proportions of days with judged good pain control were low (<25%) across groups. Among patients receiving either opioid or nonopioid medication, patients with delirium demonstrated lower proportions of days with judged good pain control than patients without delirium ( P ≤ .001), even though groups did not differ in proportions of days with judged pain ( P = .62). Cancer pain is difficult to manage in advanced cancer, especially when delirium is present; however, misinterpretation of delirium symptoms as pain cues may inflate pain judgments. Findings require replication but suggest the need for better pain assessment in older patients with advanced cancer and delirium.


Assuntos
Atitude do Pessoal de Saúde , Delírio/epidemiologia , Medição da Dor/métodos , Dor/epidemiologia , Cuidados Paliativos/organização & administração , Idoso , Idoso de 80 Anos ou mais , Analgésicos Opioides/uso terapêutico , Dor do Câncer/tratamento farmacológico , Dor do Câncer/psicologia , Feminino , Humanos , Masculino , Dor/tratamento farmacológico , Dor/psicologia , Estudos Retrospectivos , Fatores Socioeconômicos
9.
JMIR Res Protoc ; 5(3): e149, 2016 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-27480247

RESUMO

BACKGROUND: Tens of thousands of cardiac and vascular surgeries (CaVS) are performed on seniors in Canada and the United Kingdom each year to improve survival, relieve disease symptoms, and improve health-related quality of life (HRQL). However, chronic postsurgical pain (CPSP), undetected or delayed detection of hemodynamic compromise, complications, and related poor functional status are major problems for substantial numbers of patients during the recovery process. To tackle this problem, we aim to refine and test the effectiveness of an eHealth-enabled service delivery intervention, TecHnology-Enabled remote monitoring and Self-MAnagemenT-VIsion for patient EmpoWerment following Cardiac and VasculaR surgery (THE SMArTVIEW, CoVeRed), which combines remote monitoring, education, and self-management training to optimize recovery outcomes and experience of seniors undergoing CaVS in Canada and the United Kingdom. OBJECTIVE: Our objectives are to (1) refine SMArTVIEW via high-fidelity user testing and (2) examine the effectiveness of SMArTVIEW via a randomized controlled trial (RCT). METHODS: CaVS patients and clinicians will engage in two cycles of focus groups and usability testing at each site; feedback will be elicited about expectations and experience of SMArTVIEW, in context. The data will be used to refine the SMArTVIEW eHealth delivery program. Upon transfer to the surgical ward (ie, post-intensive care unit [ICU]), 256 CaVS patients will be reassessed postoperatively and randomly allocated via an interactive Web randomization system to the intervention group or usual care. The SMArTVIEW intervention will run from surgical ward day 2 until 8 weeks following surgery. Outcome assessments will occur on postoperative day 30; at week 8; and at 3, 6, 9, and 12 months. The primary outcome is worst postop pain intensity upon movement in the previous 24 hours (Brief Pain Inventory-Short Form), averaged across the previous 14 days. Secondary outcomes include a composite of postoperative complications related to hemodynamic compromise-death, myocardial infarction, and nonfatal stroke- all-cause mortality and surgical site infections, functional status (Medical Outcomes Study Short Form-12), depressive symptoms (Geriatric Depression Scale), health service utilization-related costs (health service utilization data from the Institute for Clinical Evaluative Sciences data repository), and patient-level cost of recovery (Ambulatory Home Care Record). A linear mixed model will be used to assess the effects of the intervention on the primary outcome, with an a priori contrast of weekly average worst pain intensity upon movement to evaluate the primary endpoint of pain at 8 weeks postoperation. We will also examine the incremental cost of the intervention compared to usual care using a regression model to estimate the difference in expected health care costs between groups. RESULTS: Study start-up is underway and usability testing is scheduled to begin in the fall of 2016. CONCLUSIONS: Given our experience, dedicated industry partners, and related RCT infrastructure, we are confident we can make a lasting contribution to improving the care of seniors who undergo CaVS.

10.
Palliat Support Care ; 14(2): 151-8, 2016 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-26480837

RESUMO

OBJECTIVE: Pain and delirium are commonly reported in older people with advanced cancer. However, assessing pain in this population is challenging, and there is currently no validated assessment tool for this task. The present retrospective cohort study was conducted to understand how healthcare workers (HCWs; nurses and physicians) determine that older cancer patients with delirium are in pain. METHOD: We reviewed the medical records of consecutive palliative care inpatients, 65 years of age and above (N = 113), in order to identify patient-based cues used by HCWs to make pain judgments and to examine how the cues differ by delirium subtype and outcome. RESULTS: We found that HCWs routinely make judgments about pain in older patients with delirium using a repertoire of strategies that includes patient self-report and observations of spontaneous and evoked behavior. Using these strategies, HCWs judged pain to be highly prevalent in this inpatient palliative care setting. SIGNIFICANCE OF RESULTS: These novel findings will inform the development of valid and reliable tools to assess pain in older cancer patients with delirium.


Assuntos
Competência Clínica/normas , Delírio/terapia , Neoplasias/enfermagem , Dor/diagnóstico , Cuidados Paliativos/métodos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Neoplasias/complicações , Neoplasias/tratamento farmacológico , Enfermeiras e Enfermeiros/psicologia , Enfermeiras e Enfermeiros/normas , Dor/tratamento farmacológico , Prevalência , Estudos Retrospectivos
11.
Oncol Nurs Forum ; 42(6): E339-57, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26488841

RESUMO

PURPOSE/OBJECTIVES: To identify and appraise current evidence related to the effectiveness of psychological and physical (nonpharmacologic) pain management modalities for children and young adults with cancer
. DATA SOURCES: Electronic searches in MEDLINE, EMBASE, CINAHL, PsycINFO, and Web of Science (from database inception to June 2013) for clinical trials. DATA SYNTHESIS: A total of 32 unique studies were identified. Substantial heterogeneity existed across identified studies, precluding meta-analysis. Therefore, a narrative review of included studies is presented. Studies featured psychological and/or physical pain interventions for children and young adults (N = 1,171) aged 1-21 years with a variety of cancer diagnoses. Interventions included aromatherapy, art therapy, distraction, hypnosis, physical activity, physical positioning, touch therapy, and multimodal cognitive-behavior therapy. Twenty-two studies (69%) reported success in preventing or reducing pain intensity. The level of evidence and methodologic quality of studies were generally low
. CONCLUSIONS: Current nonpharmacologic pain interventions for pediatric and young adult patients with cancer are diverse. Several modalities significantly decreased pain intensity, suggesting that these strategies may be effective methods of pain treatment, particularly in the case of painful medical procedures. Future well-designed, multicenter, randomized, controlled trials are needed to further discern treatment effects on pain and other health outcomes in this population and to compare the relative effectiveness of different modalities. IMPLICATIONS FOR NURSING: Nurses play a key role in pain assessment and management in pediatric and young adult patients with cancer. The studies included in this review constitute the beginnings of an evidence base that supports the need to implement psychological and physical interventions to improve pain outcomes in pediatric and young adult patients with cancer.


Assuntos
Neoplasias/complicações , Manejo da Dor/métodos , Dor/etiologia , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Transtornos Mentais , Psicoterapia , Adulto Jovem
12.
JMIR Res Protoc ; 3(1): e15, 2014 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-24646454

RESUMO

BACKGROUND: Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To ensure the best possible pain management advice is given, evidence-based and expert-vetted care algorithms and system design features, which are designed using user-centered methods, are required. OBJECTIVE: To develop the decision algorithm and system requirements that will inform the pain management advice provided by a real-time smartphone-based pain management app for adolescents with cancer. METHODS: A systematic approach to algorithm development and system design was utilized. Initially, a comprehensive literature review was undertaken to understand the current body of knowledge pertaining to pediatric cancer pain management. A user-centered approach to development was used as the results of the review were disseminated to 15 international experts (clinicians, scientists, and a consumer) in pediatric pain, pediatric oncology and mHealth design, who participated in a 2-day consensus conference. This conference used nominal group technique to develop consensus on important pain inputs, pain management advice, and system design requirements. Using data generated at the conference, a prototype algorithm was developed. Iterative qualitative testing was conducted with adolescents with cancer, as well as pediatric oncology and pain health care providers to vet and refine the developed algorithm and system requirements for the real-time smartphone app. RESULTS: The systematic literature review established the current state of research related to nonpharmacological pediatric cancer pain management. The 2-day consensus conference established which clinically important pain inputs by adolescents would require action (pain management advice) from the app, the appropriate advice the app should provide to adolescents in pain, and the functional requirements of the app. These results were used to build a detailed prototype algorithm capable of providing adolescents with pain management support based on their individual pain. Analysis of qualitative interviews with 9 multidisciplinary health care professionals and 10 adolescents resulted in 4 themes that helped to adapt the algorithm and requirements to the needs of adolescents. Specifically, themes were overall endorsement of the system, the need for a clinical expert, the need to individualize the system, and changes to the algorithm to improve potential clinical effectiveness. CONCLUSIONS: This study used a phased and user-centered approach to develop a pain management algorithm for adolescents with cancer and the system requirements of an associated app. The smartphone software is currently being created and subsequent work will focus on the usability, feasibility, and effectiveness testing of the app for adolescents with cancer pain.

13.
Pediatr Blood Cancer ; 60(3): 438-45, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23015413

RESUMO

BACKGROUND: Families of children with cancer are confronted with a broad range of direct costs (out-of-pocket expenses), but the nature of these costs is poorly understood. This study aimed to disaggregate and describe these costs. PROCEDURE: A prospective, mixed method, cost-of-illness design was utilized. Starting in the fourth week following their child's diagnosis, parents recorded resources consumed, and costs incurred for 1 week per month for 3 consecutive months. Any additional costs not captured in this typical 1 week period were added for the remainder of the month. Parents also discussed their costs in an audio-taped interview at the end of the 3 months. Descriptive statistics and qualitative content analyses were performed to disaggregate and describe families' costs. RESULTS: In total, 99 families reported utilizing 16 cost categories and 74 cost items. Nearly three quarters of these costs were attributed to travel (56%) and food (18%). Costly items included acquisition of a car ($CAD35,000), relocation of a family ($CAD6,000), and purchase of a wheelchair ($CAD6,800). Parents described facing significant out-of-pocket expenses to ensure that their children had access to cancer treatment, to cope with the clinical treatment side effects of treatment, and to maintain the family household. CONCLUSION: Families of children with cancer experience a wide range of costs. Our understanding of the nature of their costs and resource use may formulate the basis for future cost assessments and provide insight into practice and policy changes aimed at lessening the economic impact of this burden.


Assuntos
Efeitos Psicossociais da Doença , Família , Gastos em Saúde/estatística & dados numéricos , Neoplasias/economia , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Adulto Jovem
14.
Cancer Nurs ; 36(2): E8-E19, 2013.
Artigo em Inglês | MEDLINE | ID: mdl-22565106

RESUMO

BACKGROUND: Cancer in children may place considerable economic burden on more than individual family members. The costs incurred to families' support networks (FSNs) have not been previously studied. OBJECTIVES: The study objectives were to (a) identify and determine independent predictors of the direct and time costs incurred by the FSN and (b) explore the impact of these cancer-related costs on the FSN. METHODS: A prospective mixed-methods study was conducted. Representing the FSN, parents recorded the resources consumed and costs incurred during 1 week per month for 3 consecutive months, beginning 1 month following their child's diagnosis. Descriptive statistics, multiple regression modeling, and descriptive qualitative analytical methods were used to analyze the data. RESULTS: In total, 28 fathers and 71 mothers participated. The median total direct and time costs for the 3 months were CAN$154 and $2776, respectively, per FSN. The largest component of direct and time costs was travel and foregone leisure. Direct and time costs were greatest among those parents who identified a support network at baseline. Parents relied on their FSN to "hold the fort," which entailed providing financial support, assuming household chores, maintaining the siblings' routines, and providing cancer-related care. CONCLUSIONS: Families' support networks are confronted with a wide range of direct and time costs, the largest being travel and foregone leisure. IMPLICATIONS FOR PRACTICE: Families' support networks play an important role in mitigating the effects of families' costs. Careful screening of families without an FSN is needed.


Assuntos
Gastos em Saúde , Neoplasias/enfermagem , Pais , Adolescente , Adulto , Criança , Efeitos Psicossociais da Doença , Feminino , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/economia , Estudos Prospectivos , Estresse Psicológico/economia , Estresse Psicológico/enfermagem , Inquéritos e Questionários
15.
Pediatrics ; 129(2): 354-64, 2012 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-22250028

RESUMO

Analgesic trials pose unique scientific, ethical, and practical challenges in pediatrics. Participants in a scientific workshop sponsored by the US Food and Drug Administration developed consensus on aspects of pediatric analgesic clinical trial design. The standard parallel-placebo analgesic trial design commonly used for adults has ethical and practical difficulties in pediatrics, due to the likelihood of subjects experiencing pain for extended periods of time. Immediate-rescue designs using opioid-sparing, rather than pain scores, as a primary outcome measure have been successfully used in pediatric analgesic efficacy trials. These designs maintain some of the scientific benefits of blinding, with some ethical and practical advantages over traditional designs. Preferred outcome measures were recommended for each age group. Acute pain trials are feasible for children undergoing surgery. Pharmacodynamic responses to opioids, local anesthetics, acetaminophen, and nonsteroidal antiinflammatory drugs appear substantially mature by age 2 years. There is currently no clear evidence for analgesic efficacy of acetaminophen or nonsteroidal antiinflammatory drugs in neonates or infants younger than 3 months of age. Small sample designs, including cross-over trials and N of 1 trials, for particular pediatric chronic pain conditions and for studies of pain and irritability in pediatric palliative care should be considered. Pediatric analgesic trials can be improved by using innovative study designs and outcome measures specific for children. Multicenter consortia will help to facilitate adequately powered pediatric analgesic trials.


Assuntos
Analgésicos/uso terapêutico , Dor Crônica/tratamento farmacológico , Ensaios Clínicos como Assunto/métodos , Educação , Projetos de Pesquisa , United States Food and Drug Administration , Adulto , Fatores Etários , Analgésicos/efeitos adversos , Analgésicos/classificação , Criança , Pré-Escolar , Ensaios Clínicos como Assunto/ética , Educação/ética , Ética Médica , Estudos de Viabilidade , Humanos , Lactente , Recém-Nascido , Resultado do Tratamento , Estados Unidos , United States Food and Drug Administration/ética
16.
Psychooncology ; 21(10): 1113-23, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-21774033

RESUMO

OBJECTIVES: A diagnosis of cancer in childhood places a considerable economic burden on families, although costs are not well described. The objectives of this study were to identify and determine independent predictors of the direct and time costs incurred by such families. METHODS: A prospective, cost-of-illness study was conducted in families of children newly diagnosed with cancer. Parents recorded the resources consumed and costs incurred during 1 week per month for three consecutive months beginning the fourth week following diagnosis and listed any additional costs incurred since then. Descriptive and multiple regression analyses were performed to describe families' costs (expressed in 2007 Canadian dollars) and to determine direct and time cost predictors. RESULTS: In total, 28 fathers and 71 mothers participated. The median total direct and time costs in 3 months were $CAD3503 and $CAD23 130, respectively, per family. The largest component of direct costs was travel and of time costs was time allocated previously for unpaid activities. There were no statistically significant predictors of direct costs. Six per cent of the variance for time costs was explained by language spoken at home. CONCLUSIONS: Families of children with cancer are confronted with a wide range of direct and time costs, the largest being travel and time allocated previously for unpaid activities.


Assuntos
Efeitos Psicossociais da Doença , Família , Gastos em Saúde , Neoplasias/economia , Neoplasias/terapia , Adolescente , Adulto , Criança , Pré-Escolar , Custos e Análise de Custo , Coleta de Dados , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Ontário , Estudos Prospectivos , Análise de Regressão , Fatores de Tempo , Adulto Jovem
17.
Pediatr Blood Cancer ; 56(5): 707-17, 2011 May.
Artigo em Inglês | MEDLINE | ID: mdl-21370401

RESUMO

The costs incurred by the families of children with cancer remain under researched. The objectives were to systematically review the literature and identify research and clinical implications. Thirteen studies were critically appraised using the Pediatric Quality Appraisal Questionnaire (PQAQ) [Ungar and Santos. Value Health 2003; 6:584-594]. Existing research indicates that families incur significant variable costs throughout cancer treatment. However, problems with the published studies related to various PQAQ domains (e.g., time horizon, sensitivity analysis) rendered the magnitude of families' childhood cancer costs somewhat uncertain. Strategies for enhancing the quality of childhood cancer cost of illness research are presented. Implications for clinical practice are discussed.


Assuntos
Efeitos Psicossociais da Doença , Neoplasias/economia , Criança , Análise Custo-Benefício , Família , Custos de Cuidados de Saúde , Humanos
18.
CMAJ ; 181(8): 469-76, 2009 Oct 13.
Artigo em Inglês | MEDLINE | ID: mdl-19667033

RESUMO

BACKGROUND: We developed and tested a new method, called the Evidence-based Practice for Improving Quality method, for continuous quality improvement. METHODS: We used cluster randomization to assign 6 neonatal intensive care units (ICUs) to reduce nosocomial infection (infection group) and 6 ICUs to reduce bronchopulmonary dysplasia (pulmonary group). We included all infants born at 32 or fewer weeks gestation. We collected baseline data for 1 year. Practice change interventions were implemented using rapid-change cycles for 2 years. RESULTS: The difference in incidence trends (slopes of trend lines) between the ICUs in the infection and pulmonary groups was - 0.0020 (95% confidence interval [CI] - 0.0007 to 0.0004) for nosocomial infection and - 0.0006 (95% CI - 0.0011 to - 0.0001) for bronchopulmonary dysplasia. INTERPRETATION: The results suggest that the Evidence-based Practice for Improving Quality method reduced bronchopulmonary dysplasia in the neonatal ICU and that it may reduce nosocomial infection.


Assuntos
Displasia Broncopulmonar/prevenção & controle , Infecção Hospitalar/terapia , Medicina Baseada em Evidências/métodos , Recém-Nascido Prematuro , Garantia da Qualidade dos Cuidados de Saúde/estatística & dados numéricos , Displasia Broncopulmonar/epidemiologia , Canadá , Análise por Conglomerados , Infecção Hospitalar/epidemiologia , Medicina Baseada em Evidências/normas , Feminino , Seguimentos , Humanos , Incidência , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Masculino , Estudos Prospectivos
19.
Nurs Inq ; 15(1): 49-56, 2008 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-18271790

RESUMO

Although puppets have been employed by various disciplines in clinical and community (e.g. homes and schools) environments, little has been written about their use as a communication tool in research. In this article, a critical review of the literature is undertaken integrating the use of puppets in a qualitative research study exploring children's perspectives on and responses to a camp for children with cancer. Methodological considerations and ethical issues of using puppets as a data collection technique are discussed. Although some limitations exist, using puppets in interviews with children appear to help them to identify, clarify and verbalize their feelings.


Assuntos
Comunicação , Coleta de Dados/métodos , Pesquisa Metodológica em Enfermagem/métodos , Jogos e Brinquedos/psicologia , Psicologia da Criança , Pesquisa Qualitativa , Criança , Defesa da Criança e do Adolescente/ética , Defesa da Criança e do Adolescente/psicologia , Coleta de Dados/ética , Humanos , Entrevistas como Assunto/métodos , Relações Enfermeiro-Paciente/ética , Pesquisa Metodológica em Enfermagem/ética , Ludoterapia , Relações Pesquisador-Sujeito/ética , Relações Pesquisador-Sujeito/psicologia
20.
Pediatr Blood Cancer ; 49(7 Suppl): 1097-101, 2007 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-17943964

RESUMO

Infants with cancer will experience pain from multiple tissue-damaging procedures associated with diagnostic and therapeutic protocols. Although effective pain management is a universal goal, in infants it is less than optimal. To prevent, minimize or ameliorate procedural pain, it is necessary to understand the conceptualization and consequences of pain in these children, the optimal approaches to assessment of pain in infants, and effective pharmacologic and non-pharmacologic interventions throughout diagnosis and treatment, including palliative care. Collaboration of health professionals and parents is an essential starting point for achieving optimal pain management in this population.


Assuntos
Neoplasias/complicações , Manejo da Dor , Medição da Dor , Dor/diagnóstico , Cuidados Paliativos , Humanos , Lactente , Neoplasias/psicologia , Neoplasias/terapia
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