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1.
J Pediatr Psychol ; 48(3): 216-227, 2023 03 20.
Artigo em Inglês | MEDLINE | ID: mdl-36303445

RESUMO

BACKGROUND: Providing high-quality psychosocial care to parents and other primary caregivers of children with cancer (henceforth referred to as caregivers) is important, given the numerous challenges associated with a pediatric cancer diagnosis and the increased risk for negative psychosocial sequelae among caregivers. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is a psychosocial eHealth intervention for caregivers, developed using an iterative, user-centered process. METHOD: eSCCIP was tested in a single-arm pilot trial at Nemours Children's Hospital, Delaware (NCT05333601). The primary outcomes were intervention acceptability and feasibility, assessed via enrollment and retention targets, and item-level acceptability ratings. Enrollment and retention targets of 45% were set based on previous work, and an item-level acceptability threshold of 80% was set. A secondary exploratory analysis was conducted examining acute distress, anxiety, symptoms of post-traumatic stress, and family functioning. RESULTS: 44 caregivers enrolled in the study and 31 completed. The intervention was rated favorably by completers, with over 80% of the sample selecting "mostly true" or "very true" for all items of the eSCCIP Evaluation Questionnaire, which was used to assess acceptability and feasibility. Enrollment and retention rates were 54% and 70%, respectively. Exploratory psychosocial outcomes showed statistically significant decreases from pre-intervention to post-intervention for overall symptoms of post-traumatic stress disorder (PTSD), cluster D symptoms of PTSD (negative mood and cognitions), and anxiety. Small-moderate effect sizes were observed for all psychosocial outcomes of interest. CONCLUSIONS: eSCCIP is an acceptable and feasible intervention for caregivers. Results are promising regarding reductions in symptoms of post-traumatic stress and anxiety.


Assuntos
Neoplasias , Transtornos de Estresse Pós-Traumáticos , Criança , Humanos , Ansiedade/terapia , Cuidadores/psicologia , Estudos de Viabilidade , Neoplasias/psicologia , Projetos Piloto , Transtornos de Estresse Pós-Traumáticos/terapia , Transtornos de Estresse Pós-Traumáticos/psicologia
2.
Pediatr Cardiol ; 44(7): 1479-1486, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37355506

RESUMO

Prenatal diagnosis of congenital heart disease (CHD) often leads to anxiety, depression, and traumatic stress in expectant mothers, with long-term implications for the child and family. However, psychosocial intervention is rarely incorporated into prenatal care. HEARTPrep is a virtually delivered psychosocial intervention aimed at reducing distress and social isolation and increasing parenting self-efficacy and hope for mothers expecting a baby with CHD to promote long-term child/family well-being. This study evaluated the feasibility and acceptability of HEARTPrep. Participants were mothers receiving cardiology care for a fetal CHD diagnosis. Partners could participate with the mother. HEARTPrep was delivered through a mobile app and telehealth. Feasibility was assessed through enrollment/retention rates. Acceptability was assessed through 20 Likert-scale and five open-ended questions. Of 39 recruited mothers, 35 (90%) enrolled. Half of partners (48%) also participated. Twenty-seven of 35 enrolled mothers (77%) completed HEARTPrep. On a scale from 0 (Not at All) to 4 (Very), mean item acceptability scores ranged from 3.5 to 3.9. Mothers reported HEARTPrep helped them feel less distressed (mean: 3.74), less alone (3.84), more prepared (3.89), and more hopeful (3.84). Opportunities to process emotions, develop coping skills, learn with their partner, navigate relationships, understand they are not alone, connect with peer support, access resources, and prepare for stressors were described as helpful. HEARTPrep is feasible and acceptable for mothers expecting a baby with CHD. Future research will evaluate its efficacy in preventing/reducing maternal mental health problems and improving postnatal clinical outcomes.


Assuntos
Cardiopatias Congênitas , Intervenção Psicossocial , Feminino , Lactente , Criança , Gravidez , Humanos , Estudos de Viabilidade , Mães , Ansiedade , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/terapia
3.
Pediatr Blood Cancer ; 69(1): e29352, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34532970

RESUMO

BACKGROUND: The Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a psychosocial eHealth intervention for parents and caregivers of children with cancer (parents), was delivered in a community-based psychosocial oncology center. Primary endpoints were intervention acceptability, feasibility, and accessibility, with a secondary exploratory focus on psychosocial outcomes. PROCEDURE: Oncology therapists in a psychosocial oncology center were trained in eSCCIP delivery. Participants were eligible for participation if they were the primary caregiver of a child with cancer between the ages 0 and 17, could read and write in English, and had reliable internet access to complete eSCCIP. Surveys were administered electronically at baseline and post intervention to evaluate study endpoints. Effect sizes (Cohen's d) were computed for exploratory psychosocial outcomes. Nineteen parents completed the intervention. RESULTS: Parents rated eSCCIP as highly acceptable, feasible, and accessible. A large clinical effect was detected for acute distress (d = 0.79). Moderate clinical effects were reported for overall posttraumatic stress disorder (PTSD) symptoms (d = 0.37), negative mood/cognitions (d = 0.59), and symptoms of anxiety (d = 0.48). CONCLUSIONS: Results indicate that eSCCIP is an acceptable, feasible, and accessible psychosocial intervention for parents. Exploratory analyses suggest that participation in eSCCIP may contribute to decreases in acute distress, symptoms of anxiety, and symptoms of PTSD.


Assuntos
Cuidadores , Neoplasias , Pais , Intervenção Psicossocial , Telemedicina , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Neoplasias/terapia
4.
J Pediatr Psychol ; 47(3): 259-269, 2022 03 05.
Artigo em Inglês | MEDLINE | ID: mdl-34969064

RESUMO

OBJECTIVE: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed in Spring 2020 to assess effects of the COVID-19 pandemic on families and caregivers. Initial psychometric properties were promising. The current study examined the factor structure and evaluated convergent and criterion validity of the CEFIS in a new sample. METHODS: In October and November 2020, caregivers (N = 2,531) of youth (0-21 years) scheduled for an ambulatory care visit at Nemours Children's Hospital, Delaware completed the CEFIS and measures of convergent (PROMIS Global Mental Health Scale, Family Assessment Device) and criterion validity (PTSD Checklist-Civilian). Confirmatory factor analysis was used to examine the factor structure of the CEFIS. Bivariate correlations and logistic regression were used to examine convergent and criterion validity. RESULTS: Factor analysis supported the original six- and three-factor structures for the Exposure and Impact scales, respectively. Second-order factor analyses supported the use of Exposure, Impact, and Distress total scores. Higher scores on the CEFIS Exposure, Impact, and Distress scales were associated with increased mental health concerns and poorer family functioning. Higher scores on all CEFIS scales were also associated with greater odds of having clinically significant posttraumatic stress symptoms. CONCLUSIONS: The CEFIS is a psychometrically sound measure of the impact of the COVID-19 pandemic on family and caregiver functioning and may also be useful in identifying families who would benefit from psychological supports.


Assuntos
COVID-19 , Adolescente , Criança , Análise Fatorial , Humanos , Pandemias , Psicometria , Reprodutibilidade dos Testes , SARS-CoV-2
5.
J Pediatr Psychol ; 47(6): 631-640, 2022 06 07.
Artigo em Inglês | MEDLINE | ID: mdl-35459946

RESUMO

OBJECTIVE: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA. METHODS: The CEFIS-AYA was developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 3,912 AYAs from 21 programs at 16 institutions across the United States were collected from May 2020 to April 2021. We examined the underlying structure of the CEFIS-AYA using principal component analysis (PCA), calculated internal consistencies, and explored differences in scores by gender and age. RESULTS: Participants reported exposure to a range of COVID-19-related events (M = 9.08 events, of 28). On the bidirectional 4-point Impact scale, mean item scores were mostly above the midpoint, indicating a slightly negative impact. Kuder-Richardson 20/Cronbach's Alpha was good for Exposure (α = .76) and excellent for Impact (α = .93). PCA identified seven factors for Exposure (Severe COVID-19, Loss of Income, Limited Access to Essentials, COVID-19 Exposure, Disruptions to Activities, Disruptions to Living Conditions, and Designation as an Essential Worker) and five for Impact (Self and Family Relationships, Physical Well-Being, Emotional Well-Being, Social Well-Being, and Distress). Gender and age differences in CEFIS-AYA scores were identified. DISCUSSION: Initial reliability data are strong and support use of the CEFIS-AYA for measuring the effect of the COVID-19 pandemic on AYAs in research and clinical care.


Assuntos
COVID-19 , Neoplasias , Adolescente , COVID-19/epidemiologia , Humanos , Neoplasias/psicologia , Pandemias , Psicometria , Reprodutibilidade dos Testes , Adulto Jovem
6.
J Clin Psychol Med Settings ; 29(1): 44-53, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-33837923

RESUMO

Evidence suggests that individuals with Cystic Fibrosis (CF) experience difficulties with sleep architecture and hygiene, although research is limited. There are currently no behavioral sleep interventions for youth with CF. The current study used qualitative methods to understand sleep needs and concerns among youth with CF, as well as to obtain feedback about potentially useful behavioral sleep intervention strategies. Semi-structured interviews were conducted with youth with CF between the ages of 11-17 and their parents. Themes were extracted from the data and will be used to inform the development of a brief behavioral sleep intervention for youth with CF. Youth and their parents described several CF-specific sleep concerns, often related to respiratory symptoms, and a number of strategies used to manage these concerns. They also described concerns that apply to the general population, including pervasive use of technology around bedtime. Many evidence-based behavioral sleep intervention strategies are acceptable to youth with CF, although modifications are appropriate to reduce time burden and address CF-specific needs. Youth with CF experience a number of disease-specific and more generalized sleep concerns which are likely amenable to behavioral intervention. Results from this study will be used to inform the development of a brief behavioral sleep intervention for youth with CF.


Assuntos
Fibrose Cística , Adolescente , Criança , Fibrose Cística/complicações , Humanos , Pais , Sono
7.
J Pediatr Psychol ; 46(5): 504-513, 2021 06 03.
Artigo em Inglês | MEDLINE | ID: mdl-33749794

RESUMO

OBJECTIVE: In response to the rapidly unfolding coronavirus disease 2019 (COVID-19) pandemic in spring 2020, we developed a caregiver-report measure to understand the extent to which children and families were exposed to events related to COVID-19 and their perceptions of its impact. This article reports on the factor structure and psychometric properties of this measure. METHODS: The COVID-19 Exposure and Family Impact Scales (CEFIS) were developed by a multidisciplinary, multi-institutional team using a rapid iterative process. Data from 1805 caregivers recruited from 28 programs at 15 institutions across the United States were collected from May-September 2020. We examined the underlying structure of the CEFIS using exploratory factor analyses and its internal consistency (Cronbach's alpha). RESULTS: Participants reported a range of COVID-19-related events (M = 8.71 events of 25). On the bidirectional 4-point impact scale, mean scores were mostly above the midpoint, indicating a slightly negative impact. Cronbach's alpha was excellent for Exposure (α = .80) and Impact (α = .92). Factor analysis identified six factors for Exposure (COVID-19 experiences, Access to essentials, Disruptions to living conditions, Loss of income, Family caregiving and activities, and Designation as an essential worker). There were three factors for Impact (Personal well-being, Family interactions, and Distress). DISCUSSION: The CEFIS has strong factors assessing Exposure to events related to COVID-19, and the Impact of these events on families of children in pediatric healthcare. These initial validation data support use of the CEFIS for measuring the effect of the pandemic.


Assuntos
COVID-19 , Cuidadores , Criança , Humanos , Psicometria , Reprodutibilidade dos Testes , SARS-CoV-2 , Inquéritos e Questionários
8.
Pediatr Blood Cancer ; 67(11): e28552, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32881326

RESUMO

BACKGROUND: The impact of pediatric hematopoietic stem cell transplant (HCT) on family functioning varies, but little is known about how the timing of HCT in children's treatment course contributes to this variability. This study examines how preexisting child, sibling, and family problems, the length of time between diagnosis to HCT, and children's age at HCT are associated with family and caregiver functioning. PROCEDURE: Caregivers (n = 140) of children (≤18 years old) scheduled to undergo their first HCT completed the Psychological Assessment Tool-HCT and the Impact on Family Scale. Treatment information was extracted from electronic medical records. A bootstrapped multivariate path analysis was used to test the hypotheses. RESULTS: More preexisting family problems related to greater caregiver perceived negative impact of their child's HCT across family and caregiver functioning domains. Less time between diagnosis and HCT was associated with greater caregiver personal strain, particularly for those with younger children undergoing HCT. Younger child age at HCT was also associated with a larger negative impact on family social functioning. CONCLUSIONS: Families with preexisting problems are the most at-risk for experiencing negative impacts related to their child's HCT. The timing of a child's HCT within their treatment course and the child's age during HCT may impact families' social functioning and caregiver adjustment. Screening families for preexisting family problems, particularly for families with young children or who are abruptly learning of their child's need for an HCT, may assist providers in identifying families who would benefit from earlier or more intensive psychosocial support.


Assuntos
Adaptação Psicológica , Cuidadores/psicologia , Atenção à Saúde/normas , Família/psicologia , Neoplasias Hematológicas/psicologia , Transplante de Células-Tronco Hematopoéticas/psicologia , Estresse Psicológico/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Seguimentos , Neoplasias Hematológicas/terapia , Humanos , Lactente , Masculino , Prognóstico , Sistemas de Apoio Psicossocial , Qualidade de Vida , Fatores Socioeconômicos , Inquéritos e Questionários , Adulto Jovem
9.
J Pediatr Psychol ; 45(5): 530-539, 2020 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-32196090

RESUMO

OBJECTIVE: Psychosocial intervention studies with parents often have difficulty with regard to participant recruitment, retention, and engagement. Prior to conducting a pilot test of the Electronic Surviving Cancer Competently Intervention Program (eSCCIP), a psychosocial eHealth intervention for parents of children with cancer, a qualitative study was designed to preemptively generate strategies to address potential difficulties in these domains. METHODS: Two focus groups and three semi-structured interviews were conducted with parents of children with cancer. Qualitative data were analyzed using the principles of thematic and content analysis. Themes were generated to describe results and inform the development of concrete recruitment, retention, and engagement strategies to be utilized in future intervention trials. RESULTS: Five themes emerged specific to recruitment, and three themes emerged related to retention and engagement. Parents highlighted a number of important potential recruitment, retention, and engagement strategies, including the importance of flexibility, ease of access and use, intervention timing, and pathways to follow-up care. Themes were linked to actionable recruitment, retention, and engagement strategies which can be utilized in future studies. CONCLUSION: Results from the current study will be utilized when designing future eSCCIP intervention trials and will also be of use to the broader field of psychosocial eHealth intervention research in pediatric psychology. This study also underscores the importance of working with parent stakeholders at all phases of study design and implementation.


Assuntos
Neoplasias , Seleção de Pacientes , Telemedicina , Criança , Feminino , Grupos Focais , Humanos , Masculino , Neoplasias/terapia , Pais , Pesquisa Qualitativa
10.
J Clin Psychol Med Settings ; 26(1): 68-87, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-29679264

RESUMO

This systematic review provides a synthesis of randomized-controlled trials of technology-focused family interventions for children with chronic illnesses and their families, focused on describing the current state of the literature and generating recommendations for future family systems work in the field of eHealth/mHealth. Twenty-three studies met inclusion criteria and were included in the systematic review. No identified studies featured an mHealth delivery modality. Relevant data were extracted and studies were assessed for quality. There was great variability with regard to intervention factors (e.g., format) and family-centered intervention targets. There is some evidence that eHealth interventions may lead to improvements in particular domains of family functioning (e.g., family conflict) for some groups of participants. However, mixed results and selection of numerous different intervention targets by investigators make it challenging to draw summative conclusions about the overall effectiveness of family systems eHealth interventions. Future research should move beyond feasibility/acceptability studies and examine family-centered processes as primary outcomes. Future research should also consider novel intervention formats to determine whether intervention effects are more robust for certain groups (e.g., individuals who prefer electronic intervention delivery to in-person intervention).


Assuntos
Doença Crônica/psicologia , Doença Crônica/terapia , Terapia Familiar/métodos , Pediatria/métodos , Telemedicina/métodos , Criança , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto
11.
Pediatr Blood Cancer ; 65(3)2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29080381

RESUMO

BACKGROUND: With published evidence-based Standards for Psychosocial Care for Children with Cancer and their Families, it is important to know the current status of their implementation. This paper presents data on delivery of psychosocial care related to the Standards in the United States. PROCEDURE: Pediatric oncologists, psychosocial leaders, and administrators in pediatric oncology from 144 programs completed an online survey. Participants reported on the extent to which psychosocial care consistent with the Standards was implemented and was comprehensive and state of the art. They also reported on specific practices and services for each Standard and the extent to which psychosocial care was integrated into broader medical care. RESULTS: Participants indicated that psychosocial care consistent with the Standards was usually or always provided at their center for most of the Standards. However, only half of the oncologists (55.6%) and psychosocial leaders (45.6%) agreed or strongly agreed that their psychosocial care was comprehensive and state of the art. Types of psychosocial care provided included evidence-based and less established approaches but were most often provided when problems were identified, rather than proactively. The perception of state of the art care was associated with practices indicative of integrated psychosocial care and the extent to which the Standards are currently implemented. CONCLUSION: Many oncologists and psychosocial leaders perceive that the delivery of psychosocial care at their center is consistent with the Standards. However, care is quite variable, with evidence for the value of more integrated models of psychosocial services.


Assuntos
Atenção à Saúde/normas , Neoplasias , Sistemas de Apoio Psicossocial , Qualidade da Assistência à Saúde/normas , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Estados Unidos
12.
J Pediatr Psychol ; 43(1): 21-30, 2018 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-28541560

RESUMO

Objective: To provide a historical analysis through the examination of trends in type of articles, content areas, and population groups across all issues of the Journal of Pediatric Psychology (JPP). Method: All articles published in JPP between the years 1976-2015 were coded based on article type (e.g., original research, meta-analysis), content code (e.g., adherence, primary care), and population code (e.g., oncology, chronic and recurrent pain). Descriptive statistics were calculated. Results: The overall top article types, content codes, and population codes are described as well as top codes for each decade. Overall, the majority of articles were classified as original research. Although some population and content codes varied over time, there were some areas that were consistently present throughout issues, including family systems, cognitive/intellectual functioning, pediatric oncology, and type 1 diabetes. Many topics selected for special issues and topics were consistent with top population and content codes. Conclusions: Findings indicate that most top areas have consistently been present in JPP over the 39-year period. The current historical analysis highlights these patterns as well as serves as a historical record for JPP.


Assuntos
Bibliometria/história , Publicações Periódicas como Assunto/história , Psicologia da Criança/história , Criança , História do Século XX , História do Século XXI , Humanos , Publicações Periódicas como Assunto/tendências , Psicologia da Criança/tendências , Estados Unidos
13.
Pediatr Blood Cancer ; 64(11)2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28544310

RESUMO

BACKGROUND: Fifteen evidence-based Standards for Psychosocial Care for Children with Cancer and Their Families (Standards) were published in 2015. The Standards cover a broad range of topics and circumstances and require qualified multidisciplinary staff to be implemented. This paper presents data on the availability of psychosocial staff and existing practices at pediatric oncology programs in the United States, providing data that can be used to advocate for expanded services and prepare for implementation of the Standards. PROCEDURE: Up to three healthcare professionals from 144 programs (72% response rate) participated in an online survey conducted June-December 2016. There were 99 pediatric oncologists with clinical leadership responsibility (Medical Director/Clinical Director), 132 psychosocial leaders in pediatric oncology (Director of Psychosocial Services/Manager/most senior staff member), and 58 administrators in pediatric oncology (Administrative Director/Business Administrator/Director of Operations). The primary outcomes were number and type of psychosocial staff, psychosocial practices, and identified challenges in the delivery of psychosocial care. RESULTS: Over 90% of programs have social workers and child life specialists who provide care to children with cancer and their families. Fewer programs have psychologists (60%), neuropsychologists (31%), or psychiatrists (19%). Challenges in psychosocial care are primarily based on pragmatic issues related to funding and reimbursement. CONCLUSION: Most participating pediatric oncology programs appear to have at least the basic level of staffing necessary to implement of some of the Standards. However, the lack of a more comprehensive multidisciplinary team is a likely barrier in the implementation of the full set of Standards.


Assuntos
Institutos de Câncer/organização & administração , Pessoal de Saúde/estatística & dados numéricos , Neoplasias/terapia , Serviço Hospitalar de Oncologia/estatística & dados numéricos , Admissão e Escalonamento de Pessoal/estatística & dados numéricos , Criança , Pessoal de Saúde/psicologia , Humanos , Neoplasias/psicologia , Prognóstico
14.
J Pediatr Psychol ; 41(8): 867-78, 2016 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26743573

RESUMO

BACKGROUND: Pediatric obesity presents a significant burden. However, family-based behavioral group (FBBG) obesity interventions are largely uncovered by our health care system. The present study uses Return on Investment (ROI) and Internal Rate of Return (IRR) analyses to analyze the business side of FBBG interventions. METHODS: ROI and IRR were calculated to determine longitudinal cost-effectiveness of a FBBG intervention. Multiple simulations of cost savings are projected using three estimated trajectories of weight change and variations in assumptions. RESULTS: The baseline model of child savings gives an average IRR of 0.2% ± 0.08% and an average ROI of 20.8% ± 0.4%, which represents a break-even IRR and a positive ROI. More pessimistic simulations result in negative IRR values. CONCLUSIONS: Under certain assumptions, FBBGs offer a break-even proposition. Results are limited by lack of data regarding several assumptions, and future research should evaluate changes in cost savings following changes in child and adult weight.


Assuntos
Terapia Comportamental/economia , Redução de Custos/estatística & dados numéricos , Análise Custo-Benefício/estatística & dados numéricos , Terapia Familiar/economia , Custos de Cuidados de Saúde/estatística & dados numéricos , Obesidade Infantil/terapia , Adolescente , Adulto , Criança , Humanos , Estudos Longitudinais , Pessoa de Meia-Idade , Modelos Econômicos , Obesidade Infantil/economia , Estados Unidos , Adulto Jovem
16.
J Pediatr Psychol ; 39(3): 332-9, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24326908

RESUMO

OBJECTIVE: The current study presents results of an exploratory factor analysis (EFA) of the Behavioral Pediatric Feeding Assessment Scale (BPFAS) in a sample of rural children with overweight and obesity. Relationships between mealtime behavior and health outcomes are also explored. METHODS: EFA was used to assess the fit of the BPFAS in a group of 160 treatment-seeking children (Mage = 9.11, SD = 1.77) living in rural Midwest communities. Correlations were also computed between factor scores and select health variables (child body mass index z-score and diet variables). RESULTS: The EFA identified a 5-factor solution as the best fitting model (Tucker-Lewis Index = .96, root mean square error of approximation = .05), although several items (i.e., 7 of 25) did not load on any factor. 2 factors were correlated with health variables of interest. CONCLUSION: Study results suggest that certain items on the BPFAS may not be appropriate for use with rural children with pediatric overweight or obesity. Implications for future research and practice are discussed.


Assuntos
Comportamento Alimentar/psicologia , Sobrepeso/psicologia , População Rural , Índice de Massa Corporal , Criança , Análise Fatorial , Feminino , Humanos , Masculino , Psicometria , Inquéritos e Questionários
17.
J Patient Exp ; 11: 23743735241229374, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38414756

RESUMO

User-centered models for the development of digital health interventions are not consistently applied in healthcare settings. This study used a five-phase, user-centered approach to develop HEARTPrep©, a psychosocial intervention delivered via mobile app and telehealth to mothers expecting a baby with congenital heart disease (CHD) to promote maternal, family, and child well-being. Phases of intervention development were: (I) establishing partnerships; (II) creating content; (III) developing prototype and testable intervention; (IV) conducting think-aloud testing; and (V) completing beta testing. Partnerships with parents, clinicians, and design/technology experts were integral throughout the development of HEARTPrep©. Parents of children with CHD also served as participants in Phases II-V, contributing to the creation of content and providing feedback to inform the iterative refinement of HEARTPrep©. These five phases produced a refined digital health intervention with promising feasibility, usability, and acceptability results. This user-centered approach can be used to develop digital health interventions targeting various health outcomes.

18.
J Pediatr Psychol ; 38(4): 398-411, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-23381729

RESUMO

OBJECTIVE: A meta-analysis examined the association between camp attendance and changes in self-perceptions in children with chronic health conditions. METHODS: Studies using quantitative methods to assess changes in self-perceptions while attending camps designed for children with chronic health conditions were included in analyses. A random-effects model was used, and Cohen's d was used to calculate effect sizes at both post-camp and follow-up. Some potential moderators of effects were examined (i.e., type of measure of self-perceptions, children's chronic health condition, camp components). RESULTS: 31 studies were included in the analyses. Children experienced small, but statistically significant, improvements in self-perceptions at both post-camp (d = .25, 95% CI [.16-.34]) and extended follow-up (d = .15, 95% CI [.05-.26]). This relationship was moderated by type of measure of self-perceptions and child health condition. CONCLUSIONS: Camp attendance is associated with small improvements in self-perceptions for children with some chronic health conditions.


Assuntos
Doença Crônica/reabilitação , Autoimagem , Criança , Doença Crônica/psicologia , Humanos
19.
J Cyst Fibros ; 22(1): 179-182, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-35871972

RESUMO

Youth with CF are at increased risk for physiological and behavioral sleep difficulties due to disease-specific symptoms and more general pediatric sleep challenges. Despite evidence suggesting that behavioral sleep interventions are effective for improving common sleep difficulties, no interventions exist for youth with CF. SLEEP-CF was designed to fill this gap by providing tailored, flexible behavioral sleep support to youth with CF. Results suggest that SLEEP-CF is an acceptable and feasible behavioral sleep intervention, even in a population with normative sleep habits. There may be benefit in terms of improving sleep knowledge and sleep hygiene. Technology use during and after bedtime is prevalent. CF care team members are encouraged to assess sleep as part of routine CF care, and to provide support as indicated.


Assuntos
Fibrose Cística , Transtornos do Sono-Vigília , Humanos , Criança , Adolescente , Estudos de Viabilidade , Higiene do Sono
20.
JMIR Res Protoc ; 12: e46339, 2023 Jun 02.
Artigo em Inglês | MEDLINE | ID: mdl-37267038

RESUMO

BACKGROUND: The psychosocial needs and risks of children with cancer and their families are well-documented including increased risk of parental distress, posttraumatic stress, and anxiety. There is a critical need to provide evidence-based psychosocial care to parents and caregivers of children with cancer. Digital health interventions are important to address many barriers to in-person intervention delivery but are not widely used in pediatric psychosocial cancer care. The COVID-19 pandemic has reinforced the need for flexible, acceptable, and accessible psychosocial digital health interventions. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is an innovative digital health intervention for parents and caregivers of children with cancer, delivered through a combination of self-guided web-based content and supplemented by 3 telehealth follow-up sessions with a trained telehealth guide. A Spanish language adaptation of eSCCIP, El Programa Electronico de Intervencion para Superar Cancer Competentemente (eSCCIP-SP), has been developed. The self-guided web-based cores of eSCCIP/eSCCIP-SP are a mix of didactic video content, multifamily video discussion groups featuring parents of children with cancer, and hands-on web-based activities. OBJECTIVE: The objective of this study is to test eSCCIP/eSCCIP-SP in a multisite randomized controlled trial, compared to an internet-based education control condition consisting of information specifically focused on concerns relevant to parents and caregivers of children with cancer. METHODS: Using a randomized controlled clinical trial design, 350 eligible parents and caregivers of children with cancer will be randomly assigned to the intervention (eSCCIP/eSCCIP-SP) or an education control condition. Data will be collected at 3 time points: preintervention (prior to randomization), immediately post intervention (after 6 weeks), and at a 3-month follow-up (from baseline). Participants randomized to either condition will receive study material (eSCCIP/eSCCIP-SP intervention or education control website) in English or Spanish, based on the primary language spoken in the home and participant preference. RESULTS: The primary study end point is a reduction in acute distress from baseline to postintervention, with secondary end points focused on reductions in symptoms of posttraumatic stress and anxiety, and improvements in coping self-efficacy and cognitive coping. An additional exploratory aim will be focused on implementation strategies and potential costs and cost-savings of eSCCIP/eSCCIP-SP, laying the groundwork for future trials focused on dissemination and implementation, stepped-care models, and intervention refinement. CONCLUSIONS: This trial will provide necessary data to evaluate the efficacy of eSCCIP/eSCCIP-SP. This intervention has the potential to be an easily scalable and highly impactful psychosocial treatment option for parents and caregivers of children with cancer. TRIAL REGISTRATION: ClinicalTrials.gov NCT05294302; https://clinicaltrials.gov/ct2/show/NCT05294302. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46339.

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