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1.
Front Pediatr ; 12: 1334221, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38283632

RESUMO

Over 75% of pediatric surgery patients experience preoperative anxiety, which can lead to complicated recoveries. Current interventions are less effective for children over 12 years old. New interventions, like mindfulness-based ones (MBIs), are needed to address this issue. MBIs work well for reducing mental health symptoms in youth, but they can be challenging for beginners. Virtual reality (VR) nature settings can help bridge this gap, providing an engaging 3-D practice environment that minimizes distractions and enhances presence. However, no study has investigated the combined effects of mindfulness training in natural VR settings for pediatric surgery patients, creating a significant gap for a novel intervention. This paper aims to fill that gap by presenting a narrative review exploring the potential of a nature-based mindfulness program using VR to reduce pediatric preoperative anxiety. It begins by addressing the risks of anxiety in children undergoing surgery, emphasizing its impact on physical recovery, and supporting the use of VR for anxiety reduction in hospitals. The review then delves into VR's role in nature and mindfulness, discussing theoretical concepts, clinical applications, and effectiveness. It also examines how the combination of mindfulness, nature, and VR can create an effective intervention, supported by relevant literature. Finally, it synthesizes the existing literature's limitations, findings, gaps, and contradictions, concluding with research and clinical implications.

2.
Digit Health ; 9: 20552076231205278, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37900258

RESUMO

Introduction: Adolescents and young adults diagnosed with cancer (AYAs) are under-represented in research. The Internet and social media could increase the reach of recruitment efforts but may impact sample characteristics. This study evaluated the characteristics of AYAs recruited in-person at an urban hospital versus the Internet in terms of their sociodemographic and medical characteristics, and psychosocial wellbeing, and offers recommendation for increasing the inclusivity and representativeness of research samples. Methods: Participant data from a cross-sectional survey of AYAs in Canada were evaluated. In-person hospital recruitment used a registry to identify patients attending ambulatory clinics. Internet recruitment included notices on hospital, team members', and community partners' social media channels, and email newsletters. Independent sample t-tests and Chi-squared tests were used to identify differences in participant sociodemographic, medical, and psychosocial characteristics based on recruitment source. Results: Of 436 participants, 217 (49.8%) were recruited in-person and 219 (50.2%) online. Online participants were more likely: to be white (p < .001), women (p < .001), and Canadian-born (p < .001); to speak English at home (p < .001), live alone (p = .001) and live in rural settings (p = .014); and to be farther from diagnosis (p = .023), diagnosed with breast cancer (p < .001), and cancer free (p < .001) compared to the hospital sample. Online participants also reported higher anxiety, depression, and loneliness (p < .001), and lower social support (p < .001), self-efficacy for coping with cancer (p < .001), and life satisfaction (p = .006). Conclusions: Online recruitment yielded a more geographically diverse but less sociodemographically diverse sample of AYAs who were farther from diagnosis and had poorer psychosocial wellbeing than in-person recruitment at an urban hospital. Future research efforts should consider partnering with under-represented communities and using targeted and stratified online and in-person recruitment strategies to achieve an inclusive and representative sample of AYAs.

3.
J Surg Oncol ; 128(3): 430-437, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37537979

RESUMO

The health-related quality of life of patients with extremity soft tissue sarcoma (STS) is not precisely captured by current patient-reported outcome measures. Although functional impairment is central to their concerns, multiple sources of distress, emotional restoration, coping strategies, and somatic symptoms are crucial in approaching patients with extremity STS.


Assuntos
Sarcoma , Neoplasias de Tecidos Moles , Humanos , Qualidade de Vida , Sarcoma/diagnóstico , Extremidades , Medidas de Resultados Relatados pelo Paciente
5.
Curr Oncol ; 29(2): 1163-1175, 2022 02 16.
Artigo em Inglês | MEDLINE | ID: mdl-35200598

RESUMO

Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15-39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.


Assuntos
Neoplasias , Adolescente , Adulto , Canadá , Estudos Transversais , Feminino , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Adulto Jovem
6.
JMIR Res Protoc ; 10(12): e34652, 2021 Dec 13.
Artigo em Inglês | MEDLINE | ID: mdl-34898464

RESUMO

BACKGROUND: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. OBJECTIVE: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. METHODS: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. RESULTS: We anticipate that preliminary results will be available by Spring 2022. CONCLUSIONS: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/34652.

7.
Acta Orthop ; 92(5): 608-614, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34180749

RESUMO

Background and purpose - Involvement of patient organizations is steadily increasing in guidelines for treatment of various diseases and conditions for better care from the patient's viewpoint and better comparability of outcomes. For this reason, the Osteogenesis Imperfecta Federation Europe and the Care4BrittleBones Foundation convened an interdisciplinary task force of 3 members from patient organizations and 12 healthcare professionals from recognized centers for interdisciplinary care for children and adults with osteogenesis imperfecta (OI) to develop guidelines for a basic roadmap to surgery in OI.Methods - All information from 9 telephone conferences, expert consultations, and face-to-face meetings during the International Conference for Quality of Life for Osteogenesis Imperfecta 2019 was used by the task force to define themes and associated recommendations.Results - Consensus on recommendations was reached within 4 themes: the interdisciplinary approach, the surgical decision-making conversation, surgical technique guidelines for OI, and the feedback loop after surgery.Interpretation - The basic guidelines of this roadmap for the interdisciplinary approach to surgical care in children and adults with OI is expected to improve standardization of clinical practice and comparability of outcomes across treatment centers.


Assuntos
Tomada de Decisão Clínica , Osteogênese Imperfeita/cirurgia , Equipe de Assistência ao Paciente , Procedimentos de Cirurgia Plástica/métodos , Humanos , Qualidade de Vida , Inquéritos e Questionários
8.
Glob Qual Nurs Res ; 8: 2333393621995814, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33748333

RESUMO

There is a paucity of research examining children's experiences with cancer in India. Childhood ethics is an emerging field, focusing on the moral dimension of children's experiences, to promote children's participation in their health care. A focused ethnography, using a moral experience framework, was conducted to better understand children's participation in decisions, discussions, and actions in three oncology settings in New Delhi, India. We interviewed key informants, retrieved key documents, and conducted semi-structured interviews and participant observations with children. All 22 children demonstrated interest in varying aspects of their cancer care. Certain factors facilitated or impeded their participation. Some children became distressed when they lacked information about their treatment or were not given opportunities to enhance their understanding. The results advance our understanding of the moral experiences of children with cancer in India for healthcare professionals, policy makers, families, and interested others.

9.
J. pediatr. (Rio J.) ; 96(4): 472-478, July-Aug. 2020. tab
Artigo em Inglês | LILACS, Coleciona SUS, Sec. Est. Saúde SP | ID: biblio-1135043

RESUMO

Abstract Objective: To estimate the prevalence and presentation of bladder, bowel, and combined bladder and bowel symptoms experienced by children with osteogenesis imperfecta and to describe the socio-demographic and clinical profile of these children. Method: A descriptive study was conducted with a convenience sample of parent-child pairs of toilet-trained children aged from 3 to 18 years. Pairs were interviewed using three tools: (1) Socio-Demographic and Clinical Questionnaire; (2) Dysfunctional Voiding Scoring System; (3) Rome III Criteria along with the Bristol Stool Scale. Data were stratified by socio-demographic and clinical variables and analyzed using descriptive statistics. Results: Thirty-one parent-child pairs participated in the study; 38.7% (n = 12) children reported bowel symptoms, 19.4% (n = 6) reported a combination of bladder issues (such as holding maneuvers and urgency) and bowel symptoms (such as hard or painful bowel movements and large diameter stools). There were no reports of isolated bladder issues. Among the child participants, 16 (51.7%) identified as female and 20 (64.5%) were 5-14 years old. The most prevalent type of osteogenesis imperfecta was type III (n = 12; 38.7%) and eight (25.8%) children reported using a wheelchair. Conclusion: This is the first study to examine the prevalence and presentation of bladder, bowel, and combined bladder and bowel symptoms in children with osteogenesis imperfecta, offering a preliminary socio-demographic and clinical profile of these children. This research is an important step toward effective screening, detection, and access to care and treatment, especially for clinicians working with this group of very fragile patients.


Resumo Objetivo: Estimar a prevalência e a apresentação de sintomas urinários, intestinais e urinários e intestinais combinados sofridos por crianças com osteogênese imperfeita e descrever o perfil sociodemográfico e clínico dessas crianças. Método: Foi realizado um estudo descritivo com uma amostra de conveniência de pares de pais-filhos de crianças treinadas para usar o banheiro com idades entre três e 18 anos. Os pares foram entrevistados utilizando três instrumentos: 1) o Questionário Sociodemográfico e Clínico; 2) o questionário Dysfunctional Voiding Scoring System; 3) os Critérios de Roma III juntamente com a Escala de Bristol para Consistência de Fezes. Os dados foram estratificados por variáveis sociodemográficas e clínicas e analisados com estatísticas descritivas. Resultados: Participaram do estudo 31 pares de pais-filhos, 38,7% (n = 12) crianças relataram sintomas intestinais, 19,4% (n = 6) relataram uma combinação de problemas urinários (como segurar e urgência miccional) e sintomas intestinais (como fezes duras ou evacuações dolorosas e fezes de grande dimensão). Não houve relatos de problemas urinários isolados. Entre as crianças, 16 (51,7%) eram meninas e 20 (64,5%) tinham entre 5 e 14 anos. O tipo mais prevalente de osteogênese imperfeita foi o III (n = 12; 38,7%) e 8 (25,8%) crianças relataram usar cadeira de rodas. Conclusão: Este é o primeiro estudo a examinar a prevalência e a apresentação de sintomas urinários, intestinais e urinários e intestinais combinados em crianças com osteogênese imperfeita e que mostra um perfil sociodemográfico e clínico preliminar dessas crianças. Nossa pesquisa é um passo importante com relação ao efetivo rastreamento, detecção e acesso ao cuidado e tratamento, principalmente para os profissionais de saúde que trabalham com esse grupo de pacientes tão frágeis.


Assuntos
Humanos , Masculino , Feminino , Pré-Escolar , Criança , Adolescente , Osteogênese Imperfeita/complicações , Osteogênese Imperfeita/diagnóstico , Osteogênese Imperfeita/epidemiologia , Bexiga Urinária , Prevalência , Inquéritos e Questionários , Constipação Intestinal/etiologia , Constipação Intestinal/epidemiologia
10.
J Surg Oncol ; 121(8): 1266-1275, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-32221986

RESUMO

BACKGROUND AND OBJECTIVES: This study explored psychological functioning and coping styles in adult patients with soft-tissue sarcoma who underwent surgical procedures in a single expert sarcoma medical center in Canada. METHODS: This is a qualitative study with three formats of data collection. The interview guide was based on theoretical health-related quality of life model. We began the investigation with 2 online and 2 in-person focus groups. Four individual semistructured interviews were added to further explore emerging themes. Data were analyzed using inductive thematic networks approach. RESULTS: Twenty-eight adults (13 female, 24-75 years of age) participated. In the domain of psychological functioning we identified three main themes; changes in mood, worry, and body image concerns. In the domain of coping styles, we identified four adaptive coping styles; positive reframing and optimism, finding a purpose, being proactive, and using humor. Among the maladaptive coping styles, we found passive acceptance, and avoidance and denial. CONCLUSIONS: Psychological well-being can be contingent on physical functioning and coping styles in adults with soft-tissue sarcoma. Both psychological and physical function impact quality of life. Patients with more physical limitations, psychological distress and maladaptive coping styles should be monitored for their well-being.


Assuntos
Adaptação Psicológica , Desempenho Físico Funcional , Sarcoma/fisiopatologia , Sarcoma/psicologia , Neoplasias de Tecidos Moles/fisiopatologia , Neoplasias de Tecidos Moles/psicologia , Adulto , Afeto , Idoso , Imagem Corporal , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Sarcoma/cirurgia , Neoplasias de Tecidos Moles/cirurgia
11.
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
12.
JMIR Form Res ; 3(2): e12028, 2019 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-31008704

RESUMO

BACKGROUND: Moderate to severe postoperative pain in children is common. Increased pediatric day surgeries have shifted postoperative pain management predominantly to the home setting. Mobile health technology has the potential to overcome barriers to pain care by improving access to self-management resources. However, pain apps generally lack scientific evidence and are highly underutilized due to lack of involvement of end users in their development. Thus, an evidence-based pain self-management smartphone app that incorporates the needs and perspective of children and adolescents (end users) has potential to improve postoperative pain management. OBJECTIVE: This paper aimed to describe how the principles of user-centered design were applied to the development of iCanCope PostOp, a smartphone-based pain self-management app for children and adolescents after surgery. Specifically, it presents 2 completed phases of the user-centered design process (concept generation and ideation) for the iCanCope PostOp app. METHODS: Phase 1 was a multisite needs assessment from the perspective of 19 children and adolescents who had undergone various day surgeries, 19 parents, and 32 multidisciplinary health care providers. Children, adolescents, and parents completed individual semistructured interviews, and health care providers participated in focus groups. Data were summarized using qualitative content analysis. Phase 2 developed a pain care algorithm for the app using Delphi surveys and a 2-day in-person design workshop with 11 multidisciplinary pediatric postoperative pain experts and 2 people with lived experience with postoperative pain. RESULTS: Phase 1 identified self-management challenges to postoperative pain management and recovery; limited available resources and reliance on medications as a predominant postoperative pain management strategy; and shared responsibility of postoperative pain care by children and adolescents, parents, and health care providers. Key app functions of tracking pain, pain self-management strategies, and goal setting were identified as priorities. Phase 2 led to the successful and efficient generation of a complete preliminary pain care algorithm for the iCanCope PostOp app, including clinically relevant inputs for feasible assessment and reassessment of pain and function (rest or sleep, movement or play, and mood or worry), as well as a catalog of pain management advice to be pushed to end users (psychological, physical, pharmacological, and education). CONCLUSIONS: The concept ideation and generation phases of the user-centered design approach were successfully completed for the iCanCope PostOp app. Next steps will include design finalization, app development (iOS or Android), evaluation through a randomized controlled trial, and subsequent implementation of the iCanCope PostOp app in clinical care.

14.
J Pediatr Oncol Nurs ; 35(5): 320-331, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29848164

RESUMO

OBJECTIVE: Sisom is an interactive computer software program that allows children to rate the severity of their cancer symptoms. The study objectives were to describe the usability of Sisom in terms of ease of use, usefulness, and aesthetics and to offer suggestions for improvement. METHOD: A multisite, descriptive study was conducted to describe the usability of Sisom. A purposive sample of children, ages 6 to 12 years, being treated for cancer was recruited. English- and French-speaking children completed the eight tasks in Sisom recorded using Morae software and provided input via an audiotaped interview. Data were downloaded, transcribed verbatim, and analyzed descriptively. RESULTS: Thirty-four children with varying cancers participated. The majority of children liked Sisom and found Sisom easy to use, found it to be helpful in expressing their symptoms, and were satisfied with the aesthetics. Some children provided suggestions for improvement to optimize Sisom use in Canada. CONCLUSIONS: Children's positive responses and desire to use Sisom again suggest that future research should be directed toward implementing and evaluating its effectiveness in a variety of settings.


Assuntos
Comportamento Infantil/psicologia , Neoplasias/psicologia , Software/normas , Interface Usuário-Computador , Canadá , Criança , Feminino , Humanos , Linguística , Masculino , Oncologia/métodos , Satisfação do Paciente
15.
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
16.
J Pain Res ; 10: 137-143, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28138264

RESUMO

BACKGROUND: Spinal fusion is a common orthopedic surgery in children and adolescents and is associated with high pain levels postoperatively. If the pain is not well managed, negative outcomes may ensue. To our knowledge, there is no measure in English that assesses patient's satisfaction with postoperative pain management following idiopathic scoliosis surgery. The aim of the present study was to assess the psychometric properties of the satisfaction subscale of the English version of the Satisfaction of Adolescents with Postoperative pain management - idiopathic Scoliosis (SAP-S) scale. METHODS: Eighty-two participants aged 10-18 years, who had undergone spinal fusion surgery, fully completed the SAP-S scale at 10-14 days postdischarge. Construct validity was assessed through a principal component analysis using varimax rotation. RESULTS: Principal component analysis indicated a three-factor structure of the 13-item satisfaction subscale of the SAP-S scale. Factors referred to satisfaction regarding current medication received (Factor 1), actions taken by nurses and doctors to manage pain (Factor 2) and information received after surgery (Factor 3). Cronbach's alpha was 0.91, showing very good internal consistency. Data on satisfaction and clinical outcomes were also reported. CONCLUSION: The SAP-S is a valid and reliable measure of satisfaction with postoperative pain management that can be used in both research and clinical settings to improve pain management practices. Although it was developed and validated with adolescents who had undergone spinal fusion surgery, it can be used, with further validation, to assess adolescents' satisfaction with pain management in other postoperative contexts.

17.
J Pediatr Oncol Nurs ; 34(2): 98-105, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-27226380

RESUMO

Sisom is an interactive tool designed to help children communicate their cancer symptoms. Important design issues relevant to other cancer populations remain unexplored. This single-site, descriptive, qualitative study was conducted to linguistically validate Sisom with a group of French-speaking children with cancer, their parents, and health care professionals. The linguistic validation process included 6 steps: (1) forward translation, (2) backward translation, (3) patient testing, (4) production of a Sisom French version, (5) patient testing this version, and (6) production of the final Sisom French prototype. Five health care professionals and 10 children and their parents participated in the study. Health care professionals oversaw the translation process providing clinically meaningful suggestions. Two rounds of patient testing, which included parental participation, resulted in the following themes: (1) comprehension, (2) suggestions for improving the translations, (3) usability, (4) parental engagement, and (5) overall impression. Overall, Sisom was well received by participants who were forthcoming with input and suggestions for improving the French translations. Our proposed methodology may be replicated for the linguistic validation of other e-health tools.


Assuntos
Neoplasias/psicologia , Validação de Programas de Computador , Software/normas , Criança , Comunicação , Feminino , França , Humanos , Linguística , Masculino , Pais/psicologia , Inquéritos e Questionários , Traduções , Interface Usuário-Computador
18.
Oncol Nurs Forum ; 43(1): E34-42, 2016 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-26679455

RESUMO

PURPOSE/OBJECTIVES: To explore the extent to which contents contained in a backpack called the Venturing Out Pack (Vo-Pak) assist in meeting the practical, psychosocial, and informational needs of young adults (YAs), as well as how the Vo-Pak could better meet the needs of YAs. 
. RESEARCH APPROACH: Qualitative, descriptive.
. SETTING: A university-affiliated adult hospital cancer center in Montreal, Quebec.
. PARTICIPANTS: 12 YAs treated for cancer. 
. METHODOLOGIC APPROACH: One-time, individual, semistructured interviews. Verbatim transcripts underwent thematic analysis.
. FINDINGS: Participants viewed the Vo-Pak as a welcoming, ready-to-use, timely package that met many cancer-related needs. The Vo-Pak contains three kits. CONCLUSIONS: This program adds value to efforts to enhance cancer care for YAs. Integrating participants' recommendations contributes to the overarching goal of comprehensive person-centered care to an underserved segment of the cancer population.
. INTERPRETATION: The Vo-Pak program could be optimized by re-engaging healthcare professionals in its broader dissemination. Champions may be added to optimize the successful implementation of tangible support programs. YAs seem eager to connect with peers. The Vo-Pak can be instrumental in facilitating these connections and enabling these exchanges.


Assuntos
Atitude Frente a Saúde , Neoplasias/terapia , Assistência ao Paciente/métodos , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Apoio Social , Adulto Jovem
19.
Oncol Nurs Forum ; 42(4): 337-44, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-26148313

RESUMO

PURPOSE/OBJECTIVES: To explore the cancer experience of parents and their perceptions of supportive strategies to assist them with illness- and family-related challenges. DESIGN: Qualitative, descriptive design. SETTING: A large McGill University-affiliated hospital cancer care center in Montreal, Quebec, Canada. PARTICIPANTS: Five mothers and seven fathers aged 33-67 years with a first cancer diagnosis who received treatment at the cancer clinic within the previous year. Participants had to have at least one minor child living with them. METHODOLOGIC APPROACH: Semistructured, audio-recorded interviews. FINDINGS: Three main categories emerged. CONCLUSIONS: Coping with cancer while raising children requires delicate balancing of illness and parenting demands. Tangible support systems must include access to childcare services, home healthcare services, and transportation solutions. INTERPRETATION: Support for parenting needs is a key component of comprehensive cancer care. Oncology nurses should stay informed of all hospital, clinic, and community resources to facilitate access for parents. Unmet support needs indicate that improvements need to be made in access to medical appointments around family schedules, expanded resources for children, and reduction of wait times.


Assuntos
Adaptação Psicológica , Neoplasias/psicologia , Neoplasias/terapia , Relações Pais-Filho , Poder Familiar/psicologia , Pais/psicologia , Estresse Psicológico , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Enfermagem Familiar/organização & administração , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Quebeque , Apoio Social , Inquéritos e Questionários , Adulto Jovem
20.
Cancer Nurs ; 37(6): E25-34, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24457227

RESUMO

BACKGROUND: Developed in Norway, Sisom is an interactive, rigorously tested, computerized, communication tool designed to help children with cancer express their perceived symptoms/problems. Children travel virtually from island to island rating their symptoms/problems. While Sisom has been found to significantly improve communication in patient consultations in Norway, usability testing is warranted with US children prior to further use in research studies. OBJECTIVE: The objective of this study was to determine the usability of Sisom in a sample of English- and Spanish-speaking children in an urban US community. METHODS: A mixed-methods usability study was conducted with a purposive sample of healthy children and children with cancer. Semistructured interviews were used to assess healthy children's symptom recognition. Children with cancer completed 8 usability tasks captured with Morae 3.3 software. Data were downloaded, transcribed, and analyzed descriptively. RESULTS: Four healthy children and 8 children with cancer participated. Of the 44 symptoms assessed, healthy children recognized 15 (34%) pictorial symptoms immediately or indicated 13 (30%) pictures were good representations of the symptom. Six children with cancer completed all tasks. All children navigated successfully from one island to the next, ranking their symptom/problem severity, clicking the magnifying glass for help, or asking the researcher for assistance. All children were satisfied with the aesthetics and expressed an interest in using Sisom to communicate their symptoms/problems. CONCLUSIONS: A few minor suggestions for improvement and adjustment may optimize the use of Sisom for US children. IMPLICATIONS FOR PRACTICE: Sisom may help clinicians overcome challenges assessing children's complex symptoms/problems in a child-friendly manner.


Assuntos
Comunicação , Neoplasias/diagnóstico , Pediatria/métodos , Software/normas , População Urbana , Criança , Feminino , Humanos , Masculino , Neoplasias/complicações , Validação de Programas de Computador , Inquéritos e Questionários , Estados Unidos
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