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1.
BMJ Open ; 13(12): e074803, 2023 12 18.
Artigo em Inglês | MEDLINE | ID: mdl-38110381

RESUMO

OBJECTIVE: To describe patterns of virtual and in-person outpatient mental health service use and factors that may influence the choice of modality in a child and adolescent service. DESIGN: A pragmatic mixed-methods approach using routinely collected administrative data between 1 April 2020 and 31 March 2022 and semi-structured interviews with clients, caregivers, clinicians and staff. Interview data were coded according to the Consolidated Framework for Implementation Research (CFIR) and examined for patterns of similarity or divergence across data sources, respondents or other relevant characteristics. SETTING: Child and adolescent outpatient mental health service, Nova Scotia, Canada. PARTICIPANTS: IWK Health clinicians and staff who had participated in virtual mental healthcare following its implementation in March 2020 and clients (aged 12-18 years) and caregivers of clients (aged 3-18 years) who had received treatment from an IWK outpatient clinic between 1 April 2020 and 31 March 2022 (n=1300). Participants (n=48) in semi-structured interviews included nine clients aged 13-18 years (mean 15.7 years), 10 caregivers of clients aged 5-17 years (mean 12.7 years), eight Community Mental Health and Addictions booking and registration or administrative staff and 21 clinicians. RESULTS: During peak pandemic activity, upwards of 90% of visits (first or return) were conducted virtually. Between waves, return appointments were more likely to be virtual than first appointments. Interview participants (n=48) reported facilitators and barriers to virtual care within the CFIR domains of 'outer setting' (eg, external policies, client needs and resources), 'inner setting' (eg, communications within the service), 'individual characteristics' (eg, personal attributes, knowledge and beliefs about virtual care) and 'intervention characteristics' (eg, relative advantage of virtual or in-person care). CONCLUSIONS: Shared decision-making regarding treatment modality (virtual vs in-person) requires consideration of client, caregiver, clinician, appointment, health system and public health factors across episodes of care to ensure accessible, safe and high-quality mental healthcare.


Assuntos
Serviços de Saúde Mental , Pacientes Ambulatoriais , Criança , Humanos , Adolescente , Atenção à Saúde , Saúde Pública , Pandemias , Nova Escócia
2.
JMIR Form Res ; 7: e39334, 2023 Feb 06.
Artigo em Inglês | MEDLINE | ID: mdl-36745489

RESUMO

BACKGROUND: Mental health and addictions (MHA) care is complex and individualized and requires coordination across providers and areas of care. Knowledge management is an essential facilitator and common challenge in MHA services. OBJECTIVE: This paper aimed to describe the development of a knowledge management system (KMS) and the associated processes in 1 MHA program. We also aimed to examine the uptake and use, satisfaction, and feedback on implementation among a group of pilot testers. METHODS: This project was conducted as a continuous quality-improvement initiative. Integrated stakeholder engagement was used to scope the content and design the information architecture to be implemented using a commercially available knowledge management platform. A group of 30 clinical and administrative staff were trained and tested with the KMS over a period of 10 weeks. Feedback was collected via surveys and focus groups. System analytics were used to characterize engagement. The content, design, and full-scale implementation planning of the KMS were refined based on the results. RESULTS: Satisfaction with accessing the content increased from baseline to after the pilot. Most testers indicated that they would recommend the KMS to a colleague, and satisfaction with KMS functionalities was high. A median of 7 testers was active each week, and testers were active for a median of 4 days over the course of the pilot. Focus group themes included the following: the KMS was a solution to problems for staff members, functionality of the KMS was important, quality content matters, training was helpful and could be improved, and KMS access was required to be easy and barrier free. CONCLUSIONS: Knowledge management is an ongoing need in MHA services, and KMSs hold promise in addressing this need. Testers in 1 MHA program found a KMS that is easy to use and would recommend it to colleagues. Opportunities to improve implementation and increase uptake were identified. Future research is needed to understand the impact of KMSs on quality of care and organizational efficiency.

3.
Health Expect ; 26(1): 1-15, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36346148

RESUMO

INTRODUCTION: Engaging children and young people (CYP) with and without their parents in health research has the potential to improve the development and implementation of health interventions. However, to our knowledge, the scope of engagement activities used with this population and barriers to their engagement is unknown. The objective of this review was to identify and describe CYP engagement with and without their parents in the development and/or implementation of health interventions. METHODS: This scoping review included any primary research studies reporting on engaging CYP, with or without parents, in the design and/or implementation of health interventions. Healthcare professionals had to be involved over the course of the study and the study had to take place in either community, primary or tertiary care settings. The following databases were searched in May 2017, May 2020 and June 2021: Medline (OVID), CINAHL (EBSCO) and Embase (Elsevier). Two independent reviewers screened titles, abstracts and full-text articles and used a previously piloted extraction form to extract and summarize information from the included articles. RESULTS: Twenty-eight articles discussing twenty-four studies were included. CYP engagement throughout the research cycle was limited. There were no observed differences in the reported presence of engagement, types of interventions or outcomes of engagement between studies engaging CYP or CYP and parents. Studies engaging CYP and parents contained limited information on how these relationships affected outcomes of engagement. Engagement was enabled primarily by the maintenance of resources and relationships among stakeholders. CONCLUSIONS: Although CYP engagement often influenced health intervention and implementation design, they are inconsistently engaged across the research cycle. It is unclear whether parental involvement enhances CYP engagement. Future research should consider reporting guidelines to clarify the level of CYP and/or parent engagement, and enhance CYP engagement by fostering synergistic and sustainable partnerships with key stakeholders. PATIENT OR PUBLIC CONTRIBUTION: A parent partner with codesign experience contributed to the creation of the research questions, screened titles, abstracts and full texts, helped with data extraction and provided feedback on the manuscript.


Assuntos
Saúde da Criança , Pais , Criança , Humanos , Adolescente
4.
BMJ Open ; 12(10): e064436, 2022 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-36261240

RESUMO

OBJECTIVES: The Choice and Partnership Approach (CAPA) was developed to create an accessible, child-centred and family-centred model of child and adolescent mental health service delivery that is adaptable to different settings. We sought to describe the state of evidence regarding the extent, outcomes and contextual considerations of CAPA implementation in community mental health services. DESIGN: Scoping review. DATA SOURCES: Published and grey literature were searched using MEDLINE, Embase, CINAHL, PsycINFO, Scopus and Google to 13 and 20 July 2022, respectively. ELIGIBILITY CRITERIA: We included reports focused on the implementation, outcomes (clinical, programme or system) or a discussion of contextual factors that may impact CAPA implementation in either child and adolescent or adult mental health services. DATA EXTRACTION AND SYNTHESIS: Data were extracted using a codebook that reflected the five domains of the Consolidated Framework for Implementation Research (CFIR) and reviewed for agreement and accuracy. Data were synthesised according to the five CFIR domains. RESULTS: Forty-eight reports describing 36 unique evaluations were included. Evaluations were observational in nature; 10 employed pre-post designs. CAPA implementation, regardless of setting, was largely motivated by long wait times. Characteristics of individuals (eg, staff buy-in or skills) were not reported. Processes of implementation included facilitative leadership, data-informed planning and monitoring and CAPA training. Fidelity to CAPA was infrequently measured (n=9/36) despite available tools. Health system outcomes were most frequently reported (n=28/36); few evaluations (n=7/36) reported clinical outcomes, with only three reporting pre/post CAPA changes. CONCLUSIONS: Gaps in evidence preclude a systematic review and meta-analysis of CAPA implementation. Measurement of clinical outcomes represents an area for significant improvement in evaluation. Consistent measurement of model fidelity is essential for ensuring the accuracy of outcomes attributed to its implementation. An understanding of the change processes necessary to support implementation would be strengthened by more comprehensive consideration of contextual factors.


Assuntos
Serviços de Saúde Mental , Saúde Mental , Adolescente , Adulto , Humanos , Liderança
5.
Global Spine J ; : 21925682221126451, 2022 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-36128633

RESUMO

STUDY DESIGN: Prospective cohort study. OBJECTIVES: To identify patient trajectories of recovery defined by change in health-related quality of life (HRQOL) following surgery for adolescent idiopathic scoliosis (AIS). To explore possible predictors of trajectory membership. METHODS: Adolescent patients scheduled to undergo spinal fusion for AIS were enrolled in the Post-Operative Recovery following Spinal Correction: Home Experience (PORSCHE) study. Responses to the Pediatric Quality of Life Inventory-version 4 (PedsQL-4.0) were collected prior to surgery and 4 to 6 weeks, 3, 6, and 12 months post-operatively. Latent class growth analyses identified patient subgroups based on their unique trajectories of physical health (PH) and psychosocial health (PSH) outcomes using the PedsQL-4.0 subscale scores. Predictors included demographic, clinical, and psychosocial factors. RESULTS: Data from up to 190 patients were included (87.4% female; mean±SD age = 14.6 ± 1.9 years). Three trajectory subgroups were identified for PH and 4 trajectories were found for PSH, with a majority of patients scoring within the established range of healthy adolescents 12 months post-surgery. Increased child and parent pain catastrophizing, child trait anxiety and previous hospitalizations were associated with poorer PH outcomes, whereas increased child and parent pain catastrophizing, child state and trait anxiety, and parent state and trait anxiety were associated with poorer PSH trajectories. CONCLUSIONS: The PH and PSH trajectories identified in this study and the factors associated with their membership may inform surgical decision-making for AIS while facilitating patient and family counselling regarding peri-operative recovery and expectations.

6.
JMIR Perioper Med ; 5(1): e39617, 2022 Sep 20.
Artigo em Inglês | MEDLINE | ID: mdl-36125849

RESUMO

BACKGROUND: Tonsillectomy is a common pediatric surgical procedure performed in North America. Caregivers experience complex challenges in preparing for their child's surgery and coordinating care at home and, consequently, could benefit from access to educational resources. A previous feasibility study of Tonsil-Text-To-Me, an automated SMS text messaging service that sends 15 time-sensitive activity reminders, links to nutrition and hydration tips, pain management strategies, and guidance on monitoring for complications, showed promising results, with high levels of caregiver satisfaction and engagement. OBJECTIVE: This study aimed to pilot-test Tonsil-Text-To-Me in a real-world context to determine whether and how it might improve perioperative experiences and outcomes for caregivers and patients. METHODS: Caregivers of children aged 3 to 14 years undergoing tonsillectomy were included. Data from a historical control group and an intervention group with the same study parameters (eg, eligibility criteria and surgery team) were compared. Measures included the Parenting Self-Agency Measure, General Health Questionnaire-12, Parents' Postoperative Pain Measure, Client Satisfaction Questionnaire-8, and engagement analytics, as well as analgesic consumption, pain, child activity level, and health service use. Data were collected on the day before surgery, 3 days after surgery, and 14 days after surgery. Participants in the intervention group received texts starting 2 weeks before surgery up to the eighth day after surgery. Descriptive and inferential statistics were used. RESULTS: In total, 51 caregivers (n=32, 63% control; n=19, 37% intervention) who were predominately women (49/51, 96%), White (48/51, 94%), and employed (42/51, 82%) participated. Intervention group caregivers had a statistically significant positive difference in Parenting Self-Agency Measure scores (P=.001). The mean postoperative pain scores were higher for the control group (mean 10.0, SD 3.1) than for the intervention group (mean 8.5, SD 3.7), both of which were still above the 6/15 threshold for clinically significant pain; however, the difference was not statistically significant (t39=1.446; P=.16). Other positive but nonsignificant trends for the intervention group compared with the control group were observed for the highest level of pain (t39=0.882; P=.38), emergency department visits (χ22=1.3; P=.52; Cramer V=0.19), and other measures. Engagement with resources linked in the texts was moderate, with all but 1 being clicked on for viewing at least once by 79% (15/19) of the participants. Participants rated the intervention as highly satisfactory across all 8 dimensions of the Client Satisfaction Questionnaire (mean 29.4, SD 3.2; out of a possible value of 32.0). CONCLUSIONS: This cohort study with a historical control group found that Tonsil-Text-To-Me had a positive impact on caregivers' perioperative care experience. The small sample size and unclear impacts of COVID-19 on the study design should be considered when interpreting the results. Controlled trials with larger sample sizes for evaluating SMS text messaging interventions aimed to support caregivers of children undergoing tonsillectomy surgery are warranted.

7.
JMIR Form Res ; 6(8): e35685, 2022 Aug 02.
Artigo em Inglês | MEDLINE | ID: mdl-35738559

RESUMO

BACKGROUND: Pathways to mental health services for youth are generally complex and often involve numerous contact points and lengthy delays. When starting treatment, there are a host of barriers that contribute to low rates of therapeutic engagement. Automated text messages offer a convenient, low-cost option for information sharing and skill building, and they can potentially activate positive behaviors in youth and caregivers prior to beginning formal therapy. To date, there is little evidence for the feasibility of initiating transdiagnostic text messages during the early stages of youth and caregiver contact with community outpatient mental health services. OBJECTIVE: To develop and test the feasibility of implementing 2 novel text messaging campaigns aimed at youth clients and their caregivers during the early stages of engaging with outpatient mental health services. METHODS: A multidisciplinary panel of experts developed two 12-message interventions with youth and caregivers prior to deployment. Each message included a link to an external interactive or multimedia resource to extend skill development. Enrollment of youth aged 13 to 18 years, their caregivers, or both occurred at 2 early treatment timepoints. At both time points, text messages were delivered automatically 2 times a week for 6 weeks. Analytics and survey data were collected in 2 phases, between January and March 2020 and between January and May 2021. Enrollment, willingness to persist in using the intervention, engagement, satisfaction, perceived value, and impact were measured. Descriptive statistics were used to summarize youth and caregiver outcomes. RESULTS: A total of 41 caregivers and 36 youth consented to participate. Follow-up survey response rates were 54% (22/41) and 44%, (16/36) respectively. Over 1500 text messages were sent throughout the study. More than three-quarters (14/16, 88%) of youth reported that they learned something new and noticed a change in themselves due to receiving the texts; the same proportion (14/16, 88%) of youth said they would recommend the text messages to others. Youth ranked the first text message, related to coping with difficult emotions, as the most helpful of the series. Caregivers reported acting differently due to receiving the texts. Over two-thirds of caregivers were satisfied with the texts (16/22, 73%) and would recommend them to others (16/22, 73%). Caregivers perceived diverse levels of value in the text topics, with 9 of the 12 caregiver texts rated by at least one caregiver as the most helpful. CONCLUSIONS: Results are preliminary but show that brief, core skill-focused text messages for youth clients and caregivers in community outpatient mental health services are feasible. Both youth and caregivers reported promising knowledge and behavior change with exposure to only 12 messages over 6 weeks. A larger study with statistical power to detect changes in both perceived helpfulness and engagement is required to confirm the effectiveness of this type of transdiagnostic intervention.

8.
Obstet Gynecol ; 139(3): 391-399, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-35115480

RESUMO

OBJECTIVE: To identify distinct trajectories of dyspareunia in primiparous women and examine biopsychosocial risk factors of these trajectories. METHODS: This was a prospective cohort of 582 first-time mothers. Participants completed validated measures of dyspareunia at 20-24 (baseline) and 32-36 weeks of gestation and at 3, 6, 12, and 24 months postpartum. Risk factors were assessed at baseline and 3 months postpartum, with labor and delivery characteristics collected by medical record review. Latent class growth analysis was conducted to identify homogeneous subgroups with distinct trajectories of dyspareunia. Univariable and multivariable binomial logistic regressions examined whether predictors were associated with these trajectories. RESULTS: Overall, the prevalence of dyspareunia ranged from 31.4% at 3 months postpartum to 11.9% at 24 months. We identified two distinct classes of dyspareunia with 21% of women in the class with moderate dyspareunia and 79% in the class with minimal dyspareunia, with pain decreasing in both groups until 12 months postpartum and little change thereafter. Biomedical factors-prior chronic pain (including preexisting dyspareunia), labor epidural analgesia, induction, episiotomy, perineal laceration, mode of delivery, breastfeeding, and whether the woman had a new pregnancy during the postpartum period-did not significantly predict dyspareunia class. Greater fatigue (odds ratio [OR] 1.30; 95% CI 1.05-1.60) and depressive symptoms (OR 1.08; 95% CI 1.02-1.14) in pregnancy and fatigue (OR 1.27; 95% CI 1.04-1.56) and pain catastrophizing (OR 1.10; 95% CI 1.05-1.16) at 3 months postpartum increased the odds for the moderate relative to the minimal pain trajectory in univariable models. In a multivariable model, pain catastrophizing at 3 months postpartum (OR 1.09; 95% CI 1.04-1.15) was associated with the moderate relative to the minimal pain trajectory. CONCLUSION: We identified two distinct trajectories of dyspareunia across pregnancy and postpartum. One in five nulliparous women experienced moderate dyspareunia. Pain catastrophizing at 3 months postpartum was associated with experiencing moderate relative to minimal levels of dyspareunia.


Assuntos
Dispareunia/diagnóstico , Dispareunia/etiologia , Complicações na Gravidez/diagnóstico , Complicações na Gravidez/etiologia , Adolescente , Adulto , Progressão da Doença , Dispareunia/epidemiologia , Dispareunia/psicologia , Feminino , Seguimentos , Humanos , Modelos Logísticos , Nova Escócia/epidemiologia , Razão de Chances , Paridade , Gravidade do Paciente , Gravidez , Complicações na Gravidez/epidemiologia , Complicações na Gravidez/psicologia , Prevalência , Prognóstico , Estudos Prospectivos , Fatores de Risco , Adulto Jovem
9.
Autism ; 26(4): 839-848, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34320870

RESUMO

LAY ABSTRACT: Children with an autism spectrum disorder (autism) often have negative experiences within the surgical setting. We conducted individual interviews with 8 parents of children with autism who had recently undergone surgery, and 15 healthcare providers (HCPs) with experience caring for children with autism. We asked open-ended questions on the approaches used to support children with autism around the time of surgery, how effective they were, suggestions for improvement, and the barriers and facilitators to improvement. Three main themes emerged within an overarching metaphor of a balancing act. The first theme, finding your footing through an uncertain journey, described individual factors (e.g. anticipatory anxiety) that set the foundation for experiences. The second theme, relationships can help to keep everyone steady, highlighted how personal interactions (e.g. collaboration and empathy) influence the experience. Finally, the systems shape the experience theme captured how systemic factors (e.g. the hospital environment) affected the balancing act. These findings enriched our understanding of the surgical experiences of children with autism, families, and HCPs by demonstrating the importance of individual characteristics, relationships, and systemic factors. Future interventions should consider this complexity and intervene not just with children, but also their parents, healthcare providers, and in policy to improve experiences.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Transtorno do Espectro Autista/cirurgia , Criança , Família , Pessoal de Saúde , Humanos , Pais , Pesquisa Qualitativa
10.
J Med Internet Res ; 23(10): e30491, 2021 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-34665141

RESUMO

BACKGROUND: The COVID-19 pandemic has increased the demand for youth mental health services in Canada as disruptions to clinical care continue to persist due to the risk of transmission and exposure to the virus. Digital mental health interventions, including web-based resources and mobile apps, have provided opportunities to support youth mental health remotely across Canada. There is a need to better understand how these digital interventions are being selected, recommended, and used in various regions across Canada. OBJECTIVE: A national jurisdictional scan was completed to (1) determine what web-based programs, apps, and websites are promoted and licensed in Canada for youth mental health; (2) identify criteria and decision-making processes that Canadian jurisdictions use to select web-based programs, apps, and websites for youth mental health; and (3) identify upcoming trends, innovations, and digital mental health possibilities that are emerging in the youth sector. METHODS: The aims of the jurisdictional scan were addressed through a review of related academic and grey literature; stakeholder interviews, including individuals involved in various areas of the youth mental health sector; and a social media review of pertinent Twitter content. RESULTS: A total of 66 web-based resources and apps were identified for use by youth in Canada. 16 stakeholder interviews were completed and included discussions with researchers, clinicians, youth organizations, and others involved in digital interventions for youth mental health. These discussions identified a limited use of frameworks used to guide decision-making processes when selecting digital interventions. Many clinicians agreed on a similar set of eligibility requirements for youth mental health apps and digital resources, such as the evidence base and cultural relevance of the intervention. Stakeholders also identified upcoming trends and innovations in the youth digital mental health space, including artificial intelligence, digital phenotyping, and personalized therapy. Over 4 weeks, 2184 tweets were reviewed to identify and compare global and national trends and innovations involving digital mental health and youth. Key trends included the promotion of regional chat services as well as the effects of the COVID-19 pandemic on youth mental health and access to care. CONCLUSIONS: As organizations begin to plan for the delivery of mental health care following the pandemic, there are concerns about the sustainability of these digital mental health interventions as well as a need for services to be more informed by the experiences and preferences of youth.


Assuntos
COVID-19 , Saúde Mental , Adolescente , Inteligência Artificial , Canadá , Tomada de Decisão Clínica , Humanos , Pandemias , SARS-CoV-2
11.
Artigo em Inglês | MEDLINE | ID: mdl-34056507

RESUMO

BACKGROUND: A better understanding of early pain trajectories (patterns) following scoliosis surgery and how they relate to baseline patient characteristics and functional outcomes may allow for the development of mitigating strategies to improve patient outcomes. METHODS: This was a prospective cohort study. Adolescents with idiopathic scoliosis were recruited across multiple centers. Latent growth mixture modeling techniques were used to determine pain trajectories over the first postoperative year. RESULTS: The median numerical rating scale for pain in the hospital following surgery for adolescent idiopathic scoliosis was 5.0. It improved to 1.0 by 6 weeks, and was maintained at <1 by 3 to 12 months postoperatively. Three trajectories were identified, 2 of which involved moderate acute postoperative pain: 1 with good resolution and 1 with incomplete resolution by 1 year. The third trajectory involved mild acute postoperative pain with good resolution by 1 year. Membership in the "moderate pain with incomplete resolution" trajectory was predicted by higher baseline pain and anxiety, and patients in this trajectory reported worse quality of life than those in the trajectories with good resolution. CONCLUSIONS: Pain recovery following surgery for idiopathic scoliosis was found to be substantial during the first 6 weeks and continued up to 1 year. We identified 3 main trajectories, 2 with favorable outcomes and 1 with persistent pain and worse quality of life at 1 year postoperatively. The risk factors most associated with the latter trajectory included increased baseline pain and anxiety. LEVEL OF EVIDENCE: Prognostic Level II. See Instructions for Authors for a complete description of levels of evidence.

12.
Res Dev Disabil ; 107: 103792, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33126148

RESUMO

BACKGROUND/AIMS: Insomnia is highly prevalent in children with neurodevelopmental disorders (NDDs), yet little research exists on sleep treatment access, utilization, and provision in this population. This study explores barriers and facilitators to access, use, and provision of treatment for sleep problems as experienced by parents of children with NDDs, including Autism Spectrum Disorder (ASD), Attention-Deficit/Hyperactivity Disorder (ADHD), Cerebral Palsy (CP) and Fetal Alcohol Spectrum Disorder (FASD), and health care professionals who work with children with these conditions. METHOD: Transcripts from online focus groups and interviews, conducted separately with parents of children with NDDs (n = 43) and health care professionals (n = 44), were qualitatively analyzed using content analysis for key themes. RESULTS: Barriers included limited access to/availability of treatment, lack of knowledge/training, NDD-specific factors (e.g., symptoms, medications, and comorbidities), parent factors (e.g., capacity to implement treatment, exhaustion), and the challenging, intensive nature of sleep treatment. Facilitators included positive beliefs and attitudes, education, support, and ability to modify treatments for NDD symptoms. Barriers and facilitators were similar across all four NDDs. CONCLUSIONS: Results highlight a need for more education about sleep in NDDs and to develop accessible interventions, as well as the potential of a transdiagnostic approach to sleep treatment in this population.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade , Transtorno do Espectro Autista , Transtornos do Neurodesenvolvimento , Distúrbios do Início e da Manutenção do Sono , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Criança , Feminino , Pessoal de Saúde , Humanos , Pais , Gravidez , Distúrbios do Início e da Manutenção do Sono/terapia
13.
BMJ Open ; 10(9): e033403, 2020 09 24.
Artigo em Inglês | MEDLINE | ID: mdl-32973048

RESUMO

OBJECTIVES: Craniosynostosis is typically diagnosed and surgically corrected within the first year of life. The diagnosis and surgical correction of the condition can be a very stressful experience for families. Despite this, there is little research exploring the impact that craniosynostosis has on families, especially in the period immediately following diagnosis and correction. In this study, the authors aimed to qualitatively examine the psychosocial experience of families with a child diagnosed with craniosynostosis. DESIGN: Qualitative study. SETTING: Tertiary care paediatric health centre. PARTICIPANTS: Mothers of children newly diagnosed with single-suture, non-syndromic craniosynostosis. INTERVENTION: Semistructured interviews regarding parental experience with the initial diagnosis, their decision on corrective surgery for their child, the operative experience, the impact of craniosynostosis on the family and the challenges they encountered throughout their journey. PRIMARY AND SECONDARY OUTCOME MEASURES: Thematic analysis, a type of qualitative analysis that provides an in-depth account of participant's experiences, was used to analyse the interview data. RESULTS: Over a 4-year period, 12 families meeting eligibility criteria completed the study. Three main themes (six subthemes) emerged from the preoperative interviews: frustration with diagnostic delays (parental intuition and advocacy, hope for improved awareness), understanding what to expect (healthcare supports, interest in connecting with other families) and justifying the need for corrective surgery (influence of the surgeon, struggle with cosmetic indications). Two main themes (four subthemes) were drawn from the postoperative interviews: overcoming fear (the role of healthcare professionals, transition home) and relief (reduction in parental anxiety, cosmetic improvements). CONCLUSIONS: Overall, the diagnosis of craniosynostosis has a profound impact on families, leading them to face many struggles throughout their journey. A better understanding of these experiences will help to inform future practice, with a hope to improve this experience for other families moving forward.


Assuntos
Craniossinostoses , Adulto , Craniossinostoses/diagnóstico , Craniossinostoses/cirurgia , Família , Feminino , Pessoal de Saúde , Humanos , Masculino , Pais , Pesquisa Qualitativa , Adulto Jovem
14.
J Pediatr Psychol ; 45(7): 736-748, 2020 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-32632443

RESUMO

OBJECTIVE: Magnetic resonance imaging (MRI) is a common procedure that can be distressing for children. Although not yet studied in the context of pediatric medical procedures, self-efficacy may be a good predictor of procedural stress and a clinically feasible target for behavioral intervention. The objectives of this study were to develop the MRI Self-Efficacy Scale for Children (MRI-SEC) and assess the preliminary psychometric properties. METHODS: Development of the MRI-SEC was informed by literature searches and feedback from healthcare providers. Twenty child-parent dyads naïve to MRI and 10 child-parent dyads with MRI experience completed the MRI-SEC to assess the comprehensibility and ease of use, and to inform item and scale refinement. The final version includes four practice items and 12 items directly assessing MRI self-efficacy. To evaluate the psychometric properties, 127 children (ages 6-12) and parents naïve to MRI completed the MRI-SEC, and a series of measures to assess construct validity. To evaluate test-retest reliability 27 children completed the MRI-SEC a second time. RESULTS: The MRI-SEC demonstrated acceptable internal consistency, test-retest reliability, and convergent validity. CONCLUSION: Development of the MRI-SEC provides an opportunity to better understand the role of self-efficacy as a predictor of procedural stress and cooperation with MRI, informing reliable prediction of children who may benefit from additional support for MRI and the development of tailored behavioral interventions.


Assuntos
Imageamento por Ressonância Magnética , Autoeficácia , Inquéritos e Questionários/normas , Criança , Humanos , Psicometria , Reprodutibilidade dos Testes
15.
Clin Otolaryngol ; 45(5): 725-731, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32368851

RESUMO

OBJECTIVES: Physician and patient/parent communication is of utmost importance in consultations to improve the shared decision-making (SDM) processes. This study investigated SDM-related outcomes through turn analysis and an assessment of patient-centred dialogue. DESIGN: Multi-centre prospective cohort study analysing audio- and video-recorded patient/parent-physician interactions. SETTING: Two tertiary paediatric hospitals in Halifax, Nova Scotia and Salt Lake City, Utah. PARTICIPANTS: Paediatric otolaryngologists, patients and parents during consultation for adenotonsillectomy. MAIN OUTCOME MEASURES: Medical dialogue measures (turn analysis, patient-centredness scores via the Roter Interaction Analysis System) and SDM questionnaires (SDM-Q-9). RESULTS: Turn density was significantly higher for physicians than patients/parents (P < .001), as were total statements (P < .001), and total time talking (P < .001). The opening statement was completed by the physician in 91.5% of interactions and was significantly longer than family opening statements (P = .003). The mean number of informed consent elements addressed per interaction was 4.5 out of 6. The mean patient-centredness score was 0.2 (range 0-0.56). Significant negative correlations between patient-centredness score and physician turn density (r = -.390, P = .002), physician mean turn time (r = -.406, P = .001), total physician statements (r = -.426, P = .001) and total physician speaking time (r = -.313, P = .016) were noted. There were no correlations in SDM questionnaire scores with turn analysis variables, informed consent elements or patient-centredness scores. CONCLUSIONS: Surgeons dominated the consultation in terms of talking, mostly in a unidirectional manner. Neither patient-centredness nor turn analysis correlated with perceptions of SDM from the parents' perspective.


Assuntos
Tomada de Decisão Compartilhada , Hospitais Pediátricos , Otolaringologia/métodos , Procedimentos Cirúrgicos Otorrinolaringológicos , Relações Médico-Paciente , Encaminhamento e Consulta/organização & administração , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Estudos Prospectivos , Inquéritos e Questionários , Utah
16.
BMJ Open ; 10(5): e038314, 2020 05 11.
Artigo em Inglês | MEDLINE | ID: mdl-32398342

RESUMO

INTRODUCTION: Discharge communication is an important aspect of patient care but frequently has shortcomings in emergency departments (EDs). In a paediatric context, youth or parents with young children often leave the ED with minimal opportunity to ask questions or to ensure comprehension of important information. Strategies for improving discharge communication have primarily targeted patients and/or parents, although neither group has been engaged in intervention design or implementation. Furthermore, ED healthcare providers (HCPs), important actors in discharge communication practice, are rarely consulted regarding intervention design decisions. We will generate evidence to enhance discharge communication by engaging youth, parents and HCPs in the codesign of ED discharge communication strategies (EDUCATE) for asthma and minor head injury. METHODS AND ANALYSIS: This mixed methods study will take place at two academic paediatric EDs in Canada. The study will occur in two phases: (A) codesign and refinement of the intervention prototypes; and (B) usability testing of the prototypes. During the first phase, two codesign teams (one for each condition) will follow a series of structured design meetings based on the Behavior Change Wheel to develop the EDUCATE interventions. Each codesign team (composed of youth, parents, HCPs and study researchers) will collaborate to identify priority target behaviours and acceptable components to include in the interventions. During the second phase, we will conduct usability testing in two EDs with a group of youth, parents and HCPs to refine the interventions. Two cycles of usability testing will be conducted with intervention refinement occurring at the end of each cycle. ETHICS AND DISSEMINATION: Informed consent will be obtained from all participants. Ethics approval for this study has been obtained from the Research Ethics Board, IWK Health Centre. Results from this study will form the basis of a future effectiveness implementation trial. Key findings will be presented at national and international conferences and published within peer-reviewed journals.


Assuntos
Comunicação , Serviço Hospitalar de Emergência , Pessoal de Saúde , Pais , Alta do Paciente , Participação do Paciente , Assistência Ambulatorial , Asma/terapia , Canadá , Consenso , Traumatismos Craniocerebrais/terapia , Estudos de Viabilidade , Humanos , Avaliação de Resultados em Cuidados de Saúde
17.
Res Dev Disabil ; 98: 103573, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31982826

RESUMO

BACKGROUND: Sleep problems, particularly insomnia, are highly prevalent in children with neurodevelopmental disorders (NDD) and can negatively affect health and development. eHealth interventions may increase access to evidence-based care for insomnia for children with NDD, as programs are rare in most communities. Better Nights, Better Days (BNBD) is an online, parent-implemented intervention for pediatric insomnia in typically developing 1- to 10-year-olds. AIMS: The present study examined whether parents of children with NDD perceived the original BNBD to be usable, acceptable, and feasible, and what modifications might be necessary to adapt it for children with NDD. METHODS AND PROCEDURES: Twenty Canadian parents/caregivers of children aged 4-10 years with NDD and insomnia implemented the BNBD intervention with their children, and completed usability questionnaires. Questionnaire data were analyzed quantitatively (descriptive statistics) and qualitatively (thematic analysis). OUTCOMES AND RESULTS: Participants reported the intervention to be usable, useful, acceptable, and feasible. Several modifications were suggested to make the intervention more appropriate and acceptable for use with children with NDD. CONCLUSIONS AND IMPLICATIONS: Results support a largely transdiagnostic approach to treating sleep in children with NDD, and will inform the development of BNBD for Children with Neurodevelopmental Disorders (BNBD-NDD).


Assuntos
Acessibilidade aos Serviços de Saúde/normas , Intervenção Baseada em Internet , Transtornos do Neurodesenvolvimento/psicologia , Distúrbios do Início e da Manutenção do Sono , Telemedicina/métodos , Canadá/epidemiologia , Criança , Pré-Escolar , Estudos de Viabilidade , Feminino , Humanos , Masculino , Transtornos do Neurodesenvolvimento/epidemiologia , Avaliação de Resultados em Cuidados de Saúde , Pais , Melhoria de Qualidade , Reprodutibilidade dos Testes , Distúrbios do Início e da Manutenção do Sono/psicologia , Distúrbios do Início e da Manutenção do Sono/terapia , Inquéritos e Questionários
18.
Clin Otolaryngol ; 45(1): 32-39, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31602792

RESUMO

OBJECTIVES: Shared decision-making describes a collaborative process in which healthcare providers and patients/families make treatment decisions using the best available evidence, while taking into account the patient's values and preferences. The objectives of this study were to assess the level of decisional conflict and shared decision-making experienced by older children and their parents when considering elective adentonsillectomies. DESIGN: A prospective cohort study. SETTING: Paediatric otolaryngology clinic in a teaching hospital. PARTICIPANTS: Participants included 53 children older than 9 years and their parents who underwent consultation for tonsillectomy with or without adenoidectomy. MAIN OUTCOMES MEASURES: Children and parents completed the Decisional Conflict Scale (DCS) and Shared Decision-Making Questionnaire-Patient Version (SDM-Q-9). Surgeons completed the Shared Decision-Making Questionnaire-Physician Version (SDM-Q-Doc). RESULTS: Overall, 10 (19%) parents and 18 (34%) children reported clinically significant decisional conflict. Parents who opted not to proceed with surgery had significantly higher DCS scores than those who decided to proceed with surgery. Both parents and children SDM-Q-9 and total DCS scores were significantly negatively correlated. Physician SDM-Q-Doc and parent total DCS scores were negatively correlated, while parent and physician SDM scores were positively correlated. CONCLUSIONS: Many older children and parents reported significant decisional conflict when considering elective paediatric otolaryngology surgery. Decisional conflict levels for both children and parents decreased with greater perceived levels of shared decision-making. Older children did not appear to discern the same levels of shared decision-making as parents and surgeons. Future research should assess methods to implement shared decision-making into clinical practice for clinicians, parents and children when appropriate.


Assuntos
Adenoidectomia , Tomada de Decisão Compartilhada , Procedimentos Cirúrgicos Eletivos/métodos , Pais/psicologia , Tonsilectomia , Adolescente , Criança , Feminino , Seguimentos , Humanos , Masculino , Estudos Prospectivos
19.
BMJ Open ; 9(12): e033247, 2019 12 23.
Artigo em Inglês | MEDLINE | ID: mdl-31874887

RESUMO

INTRODUCTION: Early identification and appropriate treatment of child and adolescent mental health disorders can often be hampered by patchwork services with poorly planned or unclear pathways. The Choice and Partnership Approach (CAPA) is an evidence-based transformational model of community (community-based or outpatient) mental health and addictions services for children and adolescents that aims to better match services to needs and to improve timely access to care. CAPA has been variably implemented across jurisdictions but has not been comprehensively evaluated for its impact on system and client outcomes. Our research question is, 'To what degree does CAPA work, for whom and under what circumstances?'. The purpose of this review is twofold: (1) to gain an understanding of the extent and outcomes of the implementation of CAPA in community mental health and addictions services; and (2) to identify the role of context as it influences the implementation of CAPA and resulting client and system outcomes. METHODS AND ANALYSIS: We will conduct a realist-informed scoping review of the literature related to CAPA in either child and adolescent or adult community mental health and addictions services. Relevant studies, reports and documentation will be identified by searching the following online databases: MEDLINE, Embase, CINAHL, PsycINFO, Academic Search Premier, ERIC, Web of Science, Cochrane, Dissertations Abstracts, NCBI Bookshelf, PubMed Central and the Canadian Health Research Collection. The search strategy was developed by a health sciences library scientist and informed by a multidisciplinary team comprising methodological and content knowledge experts. The search will gather evidence from multiple online databases of peer-reviewed literature and grey literature repositories. All articles will be independently assessed for inclusion by pairs of reviewers. The key themes derived from a thematic analysis of extracted data will be presented in a narrative overview. ETHICS AND DISSEMINATION: Research ethics review is not required for this scoping review. The results will be disseminated through meetings with stakeholders (including clients and families, clinicians and decision-makers), conference presentations and peer-reviewed publication. The results of this review will inform an overarching programme of research, policy and quality indicator development to ultimately improve mental health and addictions care and subsequent mental health outcomes for children and adolescents.


Assuntos
Medicina do Vício/organização & administração , Centros Comunitários de Saúde Mental/organização & administração , Adolescente , Criança , Humanos , Avaliação das Necessidades/organização & administração , Literatura de Revisão como Assunto
20.
CMAJ Open ; 7(4): E654-E664, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31699686

RESUMO

BACKGROUND: Chronic pain affects 1-3 million Canadian children and adolescents and their families. The primary objective of the Partnering For Pain project was to collaboratively identify the top 10 research priorities in pediatric chronic pain. METHODS: Partnering For Pain took a patient-oriented research approach and followed a modified James Lind Alliance Priority Setting Partnership (PSP) to identify the top research priorities in pediatric chronic pain according to people with lived experience (patients), family members and health care providers (clinicians). The PSP was completed in 4 phases between May and December 2018: 1) national survey of stakeholders, including those with lived experience with pediatric chronic pain, family members and clinicians who treat children with chronic pain, to gather priorities, 2) data processing, 3) interim prioritization by invited patients, family members and clinicians (former research participants or identified through pediatric chronic pain programs, patient partner organizations and steering committee member networks) and 4) in-person priority-setting workshop involving patients, family members and clinicians identified via steering committee networks and partner organizations, with evaluation of patient engagement. The process was led by a national steering committee of patient and parent partners, researchers and clinicians engaged in codesign, analysis and translation of project findings. RESULTS: In phase 1, 215 Canadians (86 patients [40.0%], 56 family members [26.0%] and 73 clinicians [34.0%]) submitted 540 potential priorities that were developed into 112 unique research questions (phase 2). Of the 112 questions, 63 were rated for importance by 57 participants (19 patients [33%], 17 family members [30%] and 21 clinicians [37%]) in phase 3. In phase 4, 20 participants (6 patients [30%], 6 family members [30%] and 8 clinicians [40%]) discussed the 25 most highly rated questions and reached consensus on the final top 10. INTERPRETATION: The final priorities address pediatric chronic pain prevention, impact and treatment, as well as delivery, access and coordination of care. The priorities reflect a directed and collaborative call to action to improve existing pediatric pain research and care. PLAIN LANGUAGE SUMMARY: Chronic pain affects 1 in 5 children and teens. This means that 1-3 million Canadian youth deal with pain lasting months to years. This pain gets in the way of being active, sleeping, going to school, and getting along with friends and family. Youth with chronic pain and their families are experts on what it's like to live with pain, but, until now, research has not asked what issues they care about most. The goal of the Partnering For Pain project was to develop a list of the 10 most important things we still need to learn about chronic pain during childhood according to people who live with it, their families and health care providers. We did this in 4 steps: 1) a survey with 215 people who shared 540 concerns they have about chronic pain in childhood, 2) turning those concerns into questions that can be answered by research, 3) a survey with 57 people who ranked how important each research question was and 4) an in-person discussion with 20 people who chose the top 10 research priorities. Each step included Canadians who have had chronic pain during childhood, their families and health care providers. The final top 10 list has questions about how to better prevent and care for children and teens with chronic pain. These priorities make sure that future research focuses on what is most important to people who will use it in their everyday lives. Project video: https://youtu.be/wA-RwrFiSPk. Project website: www.partneringforpain.com.

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