Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 31
Filtrar
2.
JCO Oncol Pract ; 17(6): e827-e839, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33914620

RESUMO

PURPOSE: Although the hospital remains the dominant site for delivering most pediatric cancer care, home-based care is increasingly provided. To effectively deliver comprehensive, relevant, and acceptable care in children's homes, the voices of these key informants must be considered. We examined the views of children with cancer, their family caregivers, and clinicians on home-based cancer care to identify necessary strategies to improve the delivery of care. METHODS: Children with cancer, their family caregivers, and multiprofessional clinicians who provide care at a tertiary pediatric care center or in the community participated in audio-recorded, semistructured interviews in French and English. Interviews were conducted until data saturation in each participant group was achieved. Interviews were transcribed, coded, and analyzed using thematic analysis. RESULTS: Thirteen children, 20 family caregivers, and 22 clinicians participated. Home-based care was endorsed as a means to improve child health-, family social- and financial-, and system-level outcomes. The success of a home-based model is built on care that addresses child and family informational, treatment and care, material, and psychosocial needs. Mechanisms to improve care include enhanced homecare agency-hospital-family communication, training for homecare nurses in pediatric cancer care, virtual solutions, and an expanded breadth of services provided in-home. Child-, family-, and system-related factors affect the delivery of optimal home-based care. CONCLUSION: Children, families, and clinicians value a model of pediatric cancer care that incorporates home-based services. The insights of these key informants should be reflected in the principles that become the basis of home-based cancer care best practices.


Assuntos
Serviços de Assistência Domiciliar , Neoplasias , Cuidadores , Criança , Comunicação , Família , Humanos , Neoplasias/terapia
3.
J Pediatr Nurs ; 59: e13-e19, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33752933

RESUMO

PURPOSE: Pain is a distressing symptom for children and adolescents with cancer and is experienced by individuals differently. This study sought to determine subgroups according to their pain experiences, and how demographic, clinical, and quality of life (QOL)-related characteristics might differ across subgroups. DESIGN AND METHODS: This cross-sectional study recruited 187 pediatric patients with cancer aged 8 to 17 years old and asked them to complete measures of pain intensity, pain duration, pain interference and pain control using the Chinese translation of the validated questionnaire from the Pain Squad app, as well as 7 PROMIS measures assessing QOL-related outcomes. Latent profile analysis (LPA) was used to identify latent subgroups. RESULTS: Three subgroups of children were identified: low-pain/low-duration (69.5%), moderate-pain/high-duration (19.8%), and high-pain/moderate-duration (10.7%). Hospitalized children were more likely to be in the moderate-pain/high-duration subgroup. Children in the high-pain/moderate-duration subgroup were more likely to be cared for by unemployed caregivers. Scores on depressive symptoms (p = 0.002), anger (p < 0.001), anxiety (p = 0.045), fatigue (p = 0.044), and mobility (p = 0.008) questionnaire were significantly worse in the high-pain/moderate-duration subgroup than the other two subgroup. PRACTICE IMPLICATIONS: This study provides a scientific foundation for further studies exploring predictive factors related to pain experiences. More targeted treatment strategies targeting the specific characteristics of each subgroup will help improve patients' QOL and use of medical resources. CONCLUSIONS: The 3 identified pain subgroups demonstrate the heterogeneity in pain experiences among pediatric patients with cancer. Knowledge of these subgroups can assist clinicians in better identifying and targeting pain treatment for children with cancer.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Criança , China/epidemiologia , Estudos Transversais , Humanos , Neoplasias/complicações , Dor
4.
Support Care Cancer ; 29(2): 841-849, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-32495032

RESUMO

PURPOSE: To determine the quality of cancer symptom management when evidence from clinical practice guidelines are used in telephone-based oncology nursing services. METHODS: Guided by the Knowledge to Action Framework, we conducted a quality improvement (QI) project focused on "monitoring knowledge use" (e.g., use of practice guides) and "measuring outcomes." In 2016, 15 Pan-Canadian Oncology Symptom Triage and Remote Support (COSTaRS) practice guides that synthesize evidence from guidelines were implemented with training for all oncology nurses at a regional ambulatory oncology program. Eighteen months post-implementation, Symptom Management Analysis Tool (SMAT) was used to analyze audio-recorded calls and related documentation of cancer symptom management. RESULTS: Of 113 audio-recorded calls, 66 were COSTaRS symptoms (58%), 43 other symptoms (38%), and 4 medically complex situations (4%). Of 66 recorded calls, 63 (95%) were documented. Average SMAT quality score was 71% (range 21-100%) for audio-recordings and 63% (range 19-100%) for documentation of calls. COSTaRS practice guide use was documented in 33% calls. For these calls, average SMAT quality scores were 74% with COSTaRS versus 69% without COSTaRS for audio-recording and 73% (range 33-100%) with COSTaRS versus 58% without COSTaRS for documentation. Patient outcomes indicated symptom was resolved (38%), worse (25%), unchanged (3%), or unknown (33%). Eight patients (13%) had an ED visit within 14 days post that was related to the symptom discussed. CONCLUSIONS: Only a third of nurses indicated use of COSTaRS practice guides. There were higher quality symptom management scores when COSTaRS use was reported. Nurses documented less than what they discussed.


Assuntos
Neoplasias/enfermagem , Telemedicina/métodos , Adulto , Idoso , Idoso de 80 Anos ou mais , Instituições de Assistência Ambulatorial , Canadá , Feminino , Humanos , Masculino , Oncologia/métodos , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Neoplasias/terapia , Enfermagem Oncológica/educação , Cuidados Paliativos/métodos , Melhoria de Qualidade , Telefone , Triagem
5.
JCO Clin Cancer Inform ; 4: 1014-1026, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-33147073

RESUMO

PURPOSE: Approximately 40% of childhood cancer survivors experience chronic pain, with many also reporting pain-related disability. Given associations established in the general population among respiration, anxiety, and pain, continuous tracking and feedback of respiration may help survivors manage pain. METHODS: A feasibility, nonblinded, randomized controlled trial (RCT) comparing wearable respiratory monitoring with a control group examined feasibility, acceptability, and preliminary efficacy among survivors of childhood cancer with chronic pain who were ≥ 18 years of age, able to speak and read English, lived in the United States, and had access to a smartphone and the Internet. The primary outcomes were pain interference, pain severity, anxiety, negative affect, and perceived stress. The intervention group (n = 32) received a wearable respiratory monitor, used the device, and completed an in-application breathing exercise daily for 30 days. The control group (n = 33) received psychoeducation after completion of the study. RESULTS: Almost all participants in the intervention group (n = 31 of 32) and control group (n = 32 of 33) completed the study. Of those who completed the intervention, 90.3% wore the device for ≥ 50% of the trial. Posttreatment improvement for negative affect (Cohen d = 0.59; 95% CI, 0.09 to 1.10) was significantly greater in the intervention group compared with the control group. A follow-up study (n = 24) examined acceptability and feasibility of a second-generation device among those who completed the RCT. Most survivors (81.0%) wore the device daily during the trial and 85.7% reported satisfaction with the device and the application. CONCLUSION: The results of this pilot study support the acceptability and feasibility of wearable respiratory monitoring among survivors of childhood cancer. Larger randomized trials are needed to assess efficacy and maintenance of this intervention for chronic pain.


Assuntos
Sobreviventes de Câncer , Dor Crônica , Neoplasias , Dispositivos Eletrônicos Vestíveis , Adulto , Dor Crônica/diagnóstico , Dor Crônica/terapia , Estudos de Viabilidade , Retroalimentação , Humanos , Neoplasias/complicações , Neoplasias/terapia , Sobreviventes
6.
Complement Ther Med ; 53: 102520, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33066855

RESUMO

OBJECTIVES: To identify questionnaires assessing the use of complementary health approaches (CHA) in pediatrics, describe their content, and appraise the methodological quality of the studies and the measurement properties of the questionnaires. METHOD: Major electronic databases were searched from 2011 to 2020. Studies which aimed to assess the use of CHA and studies which reported developing and validating CHA questionnaires in pediatrics were included. Two reviewers independently screened the studies, extracted the data, and rated the methodological quality of the studies and measurement properties of the questionnaires using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. When consensus was not reached, a third reviewer was consulted. RESULTS: Thirty-eight studies were included. From these studies, 35 CHA questionnaires with a variety of different items were identified. Only two studies aimed to evaluate the measurement properties of two questionnaires. One questionnaire, available as a self- and proxy-report, was initially validated in children with juvenile idiopathic arthritis, and the other, available as an interviewer-administered questionnaire, was validated in children with cancer. According to the COSMIN, the methodological quality of both studies was inadequate or doubtful, and both questionnaires was not thoroughly validated. CONCLUSION: This systematic review showed a lack of a thoroughly validated CHA questionnaire in pediatrics. However, two questionnaires were found to hold promise. To address this gap, one of the existing questionnaires should be adapted and further validated.


Assuntos
Doença Crônica/terapia , Terapias Complementares/métodos , Pediatria , Inquéritos e Questionários/normas , Humanos
7.
Can Oncol Nurs J ; 30(3): 193-199, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33118979

RESUMO

A quality improvement project was conducted to determine the quality of telephone nursing for patients with cancer symptoms. Eligible patients were ones who telephoned the nurse about cancer symptom(s) within four weeks prior to an emergency department (ED) visit not requiring hospital admission. Experienced oncology nurses extracting data indicated appropriateness of ED visits and opportunities for improvement. The Symptom Management Analysis Tool was used to analyze nurse documentation. For 77 patients, 87% ED visits occurred within four days of calls about symptoms (e.g., pain, breathlessness, constipation, diarrhea, nausea/vomiting) and 91% could have been managed by more complete telephone assessment and/or an urgent clinic visit. Quality of nurse documentation revealed few patients were assessed adequately (38%), received any symptom-specific medication review (49%), or were guided in self-care strategies (17%). There was low-quality telephone symptom management by nurses and a need for alternative options for patients requiring urgent face-to-face assessments. Our findings highlight a gap in use of guidelines for informing telephone symptom management.

9.
Eur J Cancer ; 131: 53-67, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32302949

RESUMO

BACKGROUND: Children with cancer often undergo long treatment trajectories involving repeated needle procedures that potentially cause pain and distress. As part of a comprehensive effort to develop clinical practice guidelines (CPGs) to address pain prevention and management in children with cancer, we aimed to provide recommendations on the pharmacological and psychological management of procedure-related pain and distress. METHODS: Of the international inter-disciplinary CPG development panel (44 individuals), two working groups including 13 healthcare professionals focused on procedural pain and distress. Grading of Recommendations Assessment, Development and Evaluation methodology was used, including the use of systematic literature reviews to inform recommendations and the use of evidence to decision frameworks. At an in-person meeting in February 2018, the guideline panel discussed these frameworks and formulated recommendations which were then discussed with a patient-parent panel consisting of 4 survivors and 5 parents. RESULTS: The systematic reviews led to the inclusion of 48 randomised controlled trials (total number of participants = 2271). Quality of evidence supporting the recommendations ranged from very low to moderate. Strong recommendations were made for the use of topical anesthetics in all needle procedures, for offering deep sedation (DS)/general anesthesia (GA) to all children undergoing lumbar puncture, for the use of DS/ GA in major procedures in children of all ages, for the use of hypnosis in all needle procedures and for the use of active distraction in all needle procedures. CONCLUSION: In this CPG, an evidence-based approach to manage procedure-related pain and distress in children with cancer is presented. As children with cancer often undergo repeated needle procedures during treatment, prevention and alleviation of procedure-related pain and distress is of the utmost importance to increase quality of life in these children and their families.


Assuntos
Antineoplásicos/administração & dosagem , Agulhas/efeitos adversos , Neoplasias/tratamento farmacológico , Dor Processual/prevenção & controle , Estresse Psicológico/prevenção & controle , Fatores Etários , Criança , Medicina Baseada em Evidências/métodos , Medicina Baseada em Evidências/normas , Humanos , Injeções/efeitos adversos , Injeções/psicologia , Oncologia/métodos , Oncologia/normas , Neoplasias/psicologia , Dor Processual/etiologia , Dor Processual/psicologia , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Estresse Psicológico/etiologia
10.
J Med Internet Res ; 22(6): e16480, 2020 06 16.
Artigo em Inglês | MEDLINE | ID: mdl-32348259

RESUMO

BACKGROUND: The most commonly used means to assess pain is by patient self-reported questionnaires. These questionnaires have traditionally been completed using paper-and-pencil, telephone, or in-person methods, which may limit the validity of the collected data. Electronic data capture methods represent a potential way to validly, reliably, and feasibly collect pain-related data from patients in both clinical and research settings. OBJECTIVE: The aim of this study was to conduct a systematic review and meta-analysis to compare electronic and conventional pain-related data collection methods with respect to pain score equivalence, data completeness, ease of use, efficiency, and acceptability between methods. METHODS: We searched the Medical Literature Analysis and Retrieval System Online (MEDLINE), Excerpta Medica Database (EMBASE), and Cochrane Central Register of Controlled Trials (CENTRAL) from database inception until November 2019. We included all peer-reviewed studies that compared electronic (any modality) and conventional (paper-, telephone-, or in-person-based) data capture methods for patient-reported pain data on one of the following outcomes: pain score equivalence, data completeness, ease of use, efficiency, and acceptability. We used random effects models to combine score equivalence data across studies that reported correlations or measures of agreement between electronic and conventional pain assessment methods. RESULTS: A total of 53 unique studies were included in this systematic review, of which 21 were included in the meta-analysis. Overall, the pain scores reported electronically were congruent with those reported using conventional modalities, with the majority of studies (36/44, 82%) that reported on pain scores demonstrating this relationship. The weighted summary correlation coefficient of pain score equivalence from our meta-analysis was 0.92 (95% CI 0.88-0.95). Studies on data completeness, patient- or provider-reported ease of use, and efficiency generally indicated that electronic data capture methods were equivalent or superior to conventional methods. Most (19/23, 83%) studies that directly surveyed patients reported that the electronic format was the preferred data collection method. CONCLUSIONS: Electronic pain-related data capture methods are comparable with conventional methods in terms of score equivalence, data completeness, ease, efficiency, and acceptability and, if the appropriate psychometric evaluations are in place, are a feasible means to collect pain data in clinical and research settings.


Assuntos
Coleta de Dados/métodos , Eletrônica/métodos , Dor/diagnóstico , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
11.
BMJ Open ; 10(3): e037251, 2020 03 16.
Artigo em Inglês | MEDLINE | ID: mdl-32184315

RESUMO

INTRODUCTION: Pain negatively affects the health-related quality of life (HRQL) of adolescents with cancer. The Pain Squad+ smartphone-based application (app), has been developed to provide adolescents with real-time pain self-management support. The app uses a validated pain assessment and personalised pain treatment advice with centralised decision support via a registered nurse to enable real-time pain treatment in all settings. The algorithm informing pain treatment advice is evidence-based and expert-vetted. This trial will longitudinally evaluate the impact of Pain Squad+, with or without the addition of nurse support, on adolescent health and cost outcomes. METHODS AND ANALYSIS: This will be a pragmatic, multicentre, waitlist controlled, 3-arm parallel-group superiority randomised trial with 1:1:1 allocation enrolling 74 adolescents with cancer per arm from nine cancer centres. Participants will be 12 to 18 years, English-speaking and with ≥3/10 pain. Exclusion criteria are significant comorbidities, end-of-life status or enrolment in a concurrent pain study. The primary aim is to determine the effect of Pain Squad+, with and without nurse support, on pain intensity in adolescents with cancer, when compared with a waitlist control group. The secondary aims are to determine the immediate and sustained effect over time of using Pain Squad+, with and without nurse support, as per prospective outcome measurements of pain interference, HRQL, pain self-efficacy and cost. Linear mixed models with baseline scores as a covariate will be used. Qualitative interviews with adolescents from all trial arms will be conducted and analysed. ETHICS AND DISSEMINATION: This trial is approved by the Hospital for Sick Children Research Ethics Board. Results will provide data to guide adolescents with cancer and healthcare teams in treating pain. Dissemination will occur through partnerships with stakeholder groups, scientific meetings, publications, mass media releases and consumer detailing. TRIAL REGISTRATION NUMBER: NCT03632343 (ClinicalTrials.gov).


Assuntos
Aplicativos Móveis , Neoplasias/complicações , Manejo da Dor/métodos , Dor/etiologia , Autogestão/métodos , Smartphone , Adolescente , Criança , Protocolos Clínicos , Feminino , Humanos , Masculino , Dor/diagnóstico , Medição da Dor , Índice de Gravidade de Doença , Método Simples-Cego
12.
Stud Health Technol Inform ; 257: 250-255, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30741204

RESUMO

Digital process innovation in healthcare enables us to enhance functionality beyond what is enabled in physical process execution. However, the movement from paper artifacts and manual processes to the use of information and communication technologies (ICTs) to support healthcare delivery is challenging because system design requirements for digital processes can be much less structured and more difficult to define than for physical processes. This paper addresses the above issue and presents on our research in converting paper-based cancer symptom management practice guides to digital format for use by patients. We provide an overall architecture and three system design considerations for digital process innovation to support patient centered cancer symptom management.


Assuntos
Comunicação , Neoplasias , Atenção à Saúde , Registros Eletrônicos de Saúde , Humanos , Neoplasias/terapia
13.
JMIR Cancer ; 4(2): e10280, 2018 Dec 21.
Artigo em Inglês | MEDLINE | ID: mdl-30578200

RESUMO

BACKGROUND: Pain Squad is an evidence-based, freely available iOS app designed to assess pain in children with cancer. Once research-based technologies such as Pain Squad are validated, it is important to evaluate their performance in natural settings to optimize their real-world clinical use. OBJECTIVE: The objective of this study was to evaluate the implementation effectiveness of Pain Squad in a natural setting. METHODS: Parents of 149 children with cancer (aged 8-18 years) were contacted to invite their child to participate. Participating children downloaded Pain Squad on their own iOS devices from the Apple App Store and reported their pain using the app twice daily for 1 week. Participants then emailed their pain reports from the app to the research team and completed an online survey on their experiences. Key implementation outcomes included acceptability, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. RESULTS: Of the 149 parents contacted, 16 of their children agreed to participate. More than a third (6/16, 37.5%) of participating children returned their pain reports to the research team. Adherence to the pain assessments was 62.1% (mean 8.7/14 assessments). The 6 children who returned reports rated the app as highly feasible to download and use and rated their overall experience as acceptable. They also reported that they would be willing to sustain their Pain Squad use over several weeks and that they would recommend it to other children with cancer, which suggests that it may have potential for penetration. CONCLUSIONS: While Pain Squad was well received by the small number of children who completed the study, user uptake, engagement, and adherence were significant barriers to the implementation of Pain Squad in a natural setting. Implementation studies such as this highlight important challenges and opportunities for promoting the use and uptake of evidence-based technologies by the intended end-users.

14.
J Pediatr Oncol Nurs ; 35(6): 406-416, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29950139

RESUMO

PURPOSE: Needle procedures are among the most distressing aspects of pediatric cancer-related treatment. Virtual reality (VR) distraction offers promise for needle-related pain and distress given its highly immersive and interactive virtual environment. This study assessed the usability (ease of use and understanding, acceptability) of a custom VR intervention for children with cancer undergoing implantable venous access device (IVAD) needle insertion. METHOD: Three iterative cycles of mixed-method usability testing with semistructured interviews were undertaken to refine the VR. RESULTS: Participants included 17 children and adolescents (8-18 years old) with cancer who used the VR intervention prior to or during IVAD access. Most participants reported the VR as easy to use (82%) and understand (94%), and would like to use it during subsequent needle procedures (94%). Based on usability testing, refinements were made to VR hardware, software, and clinical implementation. Refinements focused on increasing responsiveness, interaction, and immersion of the VR program, reducing head movement for VR interaction, and enabling participant alerts to steps of the procedure by clinical staff. No adverse events of nausea or dizziness were reported. CONCLUSIONS: The VR intervention was deemed acceptable and safe. Next steps include assessing feasibility and effectiveness of the VR intervention for pain and distress.


Assuntos
Ferimentos Penetrantes Produzidos por Agulha/terapia , Neoplasias/terapia , Manejo da Dor/métodos , Dor Processual/psicologia , Realidade Virtual , Adolescente , Criança , Feminino , Humanos , Masculino , Interface Usuário-Computador
15.
Pediatr Blood Cancer ; 65(9): e27242, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29893482

RESUMO

BACKGROUND: Subcutaneous port needle insertions are painful and distressing for children with cancer. The interactive MEDiPORT robot has been programmed to implement psychological strategies to decrease pain and distress during this procedure. This study assessed the feasibility of a future MEDiPORT trial. The secondary aim was to determine the preliminary effectiveness of MEDiPORT in reducing child pain and distress during subcutaneous port accesses. METHODS: This 5-month pilot randomized controlled trial used a web-based service to randomize 4- to 9-year-olds with cancer to the MEDiPORT cognitive-behavioral arm (robot using evidence-based cognitive-behavioral interventions) or active distraction arm (robot dancing and singing) while a nurse conducted a needle insertion. We assessed accrual and retention; technical difficulties; outcome measure completion by children, parents, and nurses; time taken to complete the study and clinical procedure; and child-, parent-, and nurse-rated acceptability. Descriptive analyses, with exploratory inferential testing of child pain and distress data, were used to address study aims. RESULTS: Forty children were randomized across study arms. Most (85%) eligible children participated and no children withdrew. Technical difficulties were more common in the cognitive-behavioral arm. Completion times for the study and needle insertion were acceptable and >96% of outcome measure items were completed. Overall, MEDiPORT and the study were acceptable to participants. There was no difference in pain between arms, but distress during the procedure was less pronounced in the active distraction arm. CONCLUSION: The MEDiPORT study appears feasible to implement as an adequately-powered effectiveness-assessing trial following modifications to the intervention and study protocol. ClinicalTrials.gov NCT02611739.


Assuntos
Terapia Cognitivo-Comportamental/instrumentação , Manequins , Dor Processual/prevenção & controle , Punções/psicologia , Robótica , Estresse Psicológico/prevenção & controle , Atenção , Criança , Pré-Escolar , Medo , Feminino , Humanos , Infusões Subcutâneas/instrumentação , Infusões Subcutâneas/métodos , Infusões Subcutâneas/psicologia , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Enfermeiras e Enfermeiros/psicologia , Medição da Dor , Pais/psicologia , Projetos Piloto
16.
Oncol Nurs Forum ; 45(4): 527-544, 2018 07 02.
Artigo em Inglês | MEDLINE | ID: mdl-29947357

RESUMO

PROBLEM IDENTIFICATION: Improvements in pediatric cancer survival have increased interest in the experiences of children undergoing treatment; however, no review of the qualitative literature describing these experiences has been conducted. LITERATURE SEARCH: Databases were searched from January 2000 to January 2016 for qualitative studies describing the experience of children with cancer aged 18 years or younger. DATA EVALUATION: Two reviewers assessed abstracts for relevance and rated reporting comprehensiveness. Participant quotations and descriptions of participants' comments and behaviors were coded. Coded data were pooled to provide a thematic synthesis. SYNTHESIS: 51 studies were included. Five themes were identified. IMPLICATIONS FOR RESEARCH: Results provide data related to the experience of children with cancer that can inform practice changes and research activities aimed at enhancing quality of life.


Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Pesquisa Qualitativa
17.
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.

18.
Clin J Pain ; 34(3): 198-206, 2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-28678061

RESUMO

OBJECTIVES: Pain is a common and distressing symptom of pediatric cancer, as reported by both children and their parents. Increasingly, children with cancer are cared for as outpatients, yet little is known about how parents manage their cancer-related pain. The aim of the current study was to examine pain prevalence and characteristics, and the pharmacological, physical, and psychological pain management strategies used by parents to manage their child's cancer pain. MATERIALS AND METHODS: In total, 230 parents and caregivers (89% mothers) of children (mean age=8.93 y, SD=4.50) with cancer currently in treatment or who are survivors completed an online survey about their child's pain in the preceding month. RESULTS: Results indicated that children with cancer who were on active treatment and who were posttreatment experienced clinically significant levels of pain. Parents reported using more physical and psychological strategies than pharmacological strategies to manage their child's pain. The most frequently used physical/psychological strategy was distraction and acetaminophen was the most frequently administered pain medication. Parents' confidence in managing their child's pain was inversely associated with both how much pain they perceived their child had, and also whether they had given any pain medication. DISCUSSION: The results of this study suggest that despite parents' use of pain management strategies, management of cancer-related pain continues to be a problem for children during treatment and into survivorship.


Assuntos
Neoplasias/epidemiologia , Dor/epidemiologia , Acetaminofen/uso terapêutico , Adulto , Analgésicos não Narcóticos/uso terapêutico , Cuidadores , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Manejo da Dor , Percepção da Dor , Pais , Prevalência , Adulto Jovem
19.
Texto & contexto enferm ; 27(4): e3990017, 2018.
Artigo em Português | LILACS, BDENF - Enfermagem | ID: biblio-979406

RESUMO

RESUMO Objetivo: discutir, a partir do referencial da complexidade, as estratégias de ação e interação adotadas pelos profissionais de saúde para o cuidado à criança hospitalizada com dor oncológica crônica. Método: pesquisa de abordagem qualitativa, realizada com base no referencial metodológico da Teoria Fundamentada nos Dados e no referencial teórico do Pensamento Complexo, na perspectiva de Edgar Morin. A entrevista semiestruturada e a observação não participante foram utilizadas para a coleta de dados. Participaram da pesquisa 21 profissionais de saúde, os quais foram organizados em três grupos amostrais: enfermeiros; técnicos de enfermagem; e profissionais da equipe multiprofissional de saúde. Os resultados da pesquisa foram validados por cinco examinadores, dos quais três apresentam expertise no método de pesquisa. Resultados: a categoria "Lidando com a complexidade do contexto gerencial de cuidado à criança com dor oncológica crônica", por meio de suas subcategorias, revelou que os profissionais de saúde utilizam o lúdico, o diálogo, a empatia, a relação afetiva e o trabalho em equipe como estratégias de interação para cuidar da criança e do familiar. Ademais, os resultados apresentam a busca da espiritualidade e do equilíbrio emocional como estratégias de ação necessárias para lidar com o sofrimento infantil e familiar. Conclusão: os resultados revelam a necessidade de os profissionais de saúde estabelecerem estratégias de ação que melhorem a sua interação com a criança e com o familiar, posto que uma efetiva interação facilita o processo de avaliação e manejo da dor, bem como viabiliza a continuidade e a qualidade do cuidado prestado.


RESUMEN Objetivo: discutir, a partir del referencial de la complejidad, las estrategias de acción e interacción adoptadas por los profesionales de salud para el cuidado al niño hospitalizado con dolor oncológico crónico. Método: investigación de abordaje cualitativo, realizada con base en el referencial metodológico de la Teoría Fundamentada en los Datos y en el referencial teórico del Pensamiento Complejo, en la perspectiva de Edgar Morin. La entrevista semiestructurada y la observación no participante se utilizaron para la recolección de datos. Participaron de la investigación 21 profesionales de salud, los cuales fueron organizados en tres grupos muestrales: enfermeros; técnicos de enfermería; y profesionales del equipo multiprofesional de salud. Los resultados de la investigación fueron validados por cinco examinadores, de los cuales tres presentan experiencia en el método de investigación. Resultados: la categoría "Lidiando con la complejidad del contexto gerencial de cuidado al niño con dolor oncológico crónico", por medio de sus subcategorías, reveló que los profesionales de salud utilizan el lúdico, el diálogo, la empatía, la relación afectiva y el trabajo en equipo como estrategias de interacción para cuidar del niño y del familiar. Además, los resultados presentan la búsqueda de la espiritualidad y del equilibrio emocional como estrategias de acción necesarias para lidiar con el sufrimiento infantil y familiar. Conclusión: los resultados revelan la necesidad de que los profesionales de salud establezcan estrategias de acción que mejoren su interacción con el niño y con el familiar, puesto que una efectiva interacción facilita el proceso de evaluación y manejo del dolor, así como viabiliza la continuidad y la calidad del cuidado prestado.


ABSTRACT Objective: to discuss, from the complexity underpinning, the action and interaction strategies adopted by healthcare professionals for the care of hospitalized children with chronic cancer pain. Method: qualitative approach research, performed based on the methodological underpinning of the Grounded Theory and on the theoretical underpinning of the Complex Thought, from the perspective of Edgar Morin. The semi-structured interview and the non-participant observation were used to collect data. A total of 21 health professionals were included in the research and they were organized into three sample groups: nurses; nursing technicians; and professionals of the multiprofessional healthcare team. The results of the research were validated by five examiners, three of whom present expertise in the research method. Results: the category "Dealing with the complexity of the managerial context of the care provision to children with chronic cancer pain to children with chronic cancer pain", through its subcategories, showed that healthcare professionals use the playful activities, the dialogue, the empathy, the affective relationship, and the teamwork as interaction strategies to provide care to the child and the family. In addition, the results present the search for spirituality and emotional balance as action strategies that are necessary to deal with child and family suffering. Conclusion: the results present the need for healthcare professionals to establish action strategies that improve their interaction with the child and their relatives, since an effective interaction makes the process of assessment and management of pain easier, as well as it favors the continuity and the quality of the care provided.


Assuntos
Humanos , Criança , Cuidado da Criança , Estratégias de Saúde , Dor Crônica , Relações Interpessoais , Neoplasias
20.
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
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA
...