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1.
Cardiol Young ; : 1-7, 2024 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-38622972

RESUMO

BACKGROUND: The study of psychological well-being and related resilient outcomes is of increasing focus in cardiovascular research. Despite the critical importance of psychological well-being and related resilient outcomes in promoting optimal cardiac health, there have been very few psychological interventions directed towards children with heart disease. This paper describes the development and theoretical framework of the WE BEAT Wellbeing Education Program, a group-based psychoeducation and coping skills training intervention designed to improve psychological well-being and resilience in adolescents with paediatric heart disease. METHODS: Program development was informed by patient and family needs and input gathered via large, international survey methods as well as qualitative investigation, a theoretical framework, and related resilience intervention research. RESULTS: An overview of the WE BEAT intervention components and structure of the programme is provided. CONCLUSIONS: The WE BEAT Wellbeing Education Program was developed as one of the first resiliency-focused interventions in paediatric heart disease with an overall objective to foster positive psychological well-being and resilient outcomes through a health promotion and prevention lens in an accessible format while providing access to safe, peer-to-peer community building. Feasibility pilot results are forthcoming. Future directions include mobile app-based delivery and larger-scale efficacy and implementation trials.

2.
J Pediatr Gastroenterol Nutr ; 78(3): 614-622, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38504390

RESUMO

OBJECTIVES: Dissatisfaction with one's body can be distressing; youth with inflammatory bowel disease (IBD) may be at increased risk for body image dissatisfaction given disease symptoms and treatment side effects. Yet, no studies have examined body image dissatisfaction over time in youth with IBD and whether depressive symptoms are associated with change in dissatisfaction. METHODS: Fifty-seven pediatric participants (8-17 years old) newly diagnosed with IBD were enrolled. Youth completed questionnaires assessing body image dissatisfaction and depressive symptoms shortly after diagnosis (Time 1) and 12 months later (Time 2). Multilevel longitudinal modeling was used to test the extent to which body image dissatisfaction changed across the first year of diagnosis and to test change in body image dissatisfaction as a function of depressive symptoms. RESULTS: Findings indicated significant between- and within-person variance in body image dissatisfaction over the 12 months, yet the sample as a whole did not report significant changes in dissatisfaction from Time 1 to Time 2. Children reporting depressive symptoms greater than their individual average over time reported greater body image dissatisfaction. Between-person variation in depressive symptoms demonstrated a significant interaction with time. As an individual's depressive symptoms exceeded the group average, their body image dissatisfaction increased, although less drastically as time since diagnosis progressed. CONCLUSIONS: Findings suggest that body image dissatisfaction is a complex and dynamic construct across youth and that interventions for pediatric IBD patients need to be tailored to the needs of individuals. Methods for assessing body image dissatisfaction efficiently and repeatedly across multiple visits are provided.


Assuntos
Insatisfação Corporal , Doenças Inflamatórias Intestinais , Adolescente , Humanos , Criança , Doenças Inflamatórias Intestinais/complicações , Inquéritos e Questionários , Depressão/etiologia , Imagem Corporal
3.
J Card Fail ; 30(1): 64-77, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38065308

RESUMO

Given the numerous opportunities and the wide knowledge gaps in pediatric heart failure, an international group of pediatric heart failure experts with diverse backgrounds were invited and tasked with identifying research gaps in each pediatric heart failure domain that scientists and funding agencies need to focus on over the next decade.


Assuntos
Insuficiência Cardíaca , Humanos , Criança , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/terapia , Lacunas de Evidências
4.
Child Neuropsychol ; 30(3): 503-537, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37291962

RESUMO

The incidence of pediatric solid organ transplantation (SOT) has increased in recent decades due to medical and surgical advances as well as improvements in organ procurement. Survival rates for pediatric kidney, liver, and heart transplantation are above 85% but patients continue to experience complex healthcare needs over their lifetime. Long-term developmental and neuropsychological sequelae are becoming increasingly recognized in this population, although preliminary work is limited and deserves further attention. Neuropsychological weaknesses are often present prior to transplantation and may be related to underlying congenital conditions as well as downstream impact of the indicating organ dysfunction on the central nervous system. Neuropsychological difficulties pose risk for functional complications, including disruption to adaptive skill development, social-emotional functioning, quality of life, and transition to adulthood. The impact of cognitive dysfunction on health management activities (e.g., medication adherence, medical decision-making) is also an important consideration given these patients' lifelong medical needs. The primary aim of this paper is to provide preliminary guidelines and clinical strategies for assessment of neuropsychological outcomes across SOT populations for pediatric neuropsychologists and the multidisciplinary medical team, including detailing unique and shared etiologies and risk factors for impairment across organ types, and functional implications. Recommendations for clinical neuropsychological monitoring as well as multidisciplinary collaboration within pediatric SOT teams are also provided.


Assuntos
Transplante de Coração , Transplante de Órgãos , Criança , Humanos , Neuropsicologia , Qualidade de Vida/psicologia , Transplante de Órgãos/efeitos adversos , Transplante de Órgãos/psicologia , Ajustamento Social
5.
Clin Pract Pediatr Psychol ; 11(2): 217-227, 2023 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37583937

RESUMO

Objective: Most of the transition literature examines adolescents and young adults with special healthcare needs, though many youth will eventually transition to adult healthcare providers, regardless of medical complexity. This study addresses this gap by examining transition needs and experiences specifically within a college student sample of emerging adults without complex medical needs. Methods: 108 college students (Mage=20.93 years, SD=1.14) completed interviews and questionnaires regarding transition. The most difficult and easiest aspects of healthcare self-management were thematically coded. Differences in questionnaires were assessed across sources of transition education. Results: 52% of college students reported receiving education about managing healthcare from medical providers versus 95% from caregivers. Notably, 57% desired more support. Those receiving medical provider education reported higher responsibility. Students reported most difficulty managing health insurance. Results were similar across racial and ethnic groups and genders. Conclusions: Gaps in transition preparation include low rates of medical provider education and support regarding health insurance. College students receiving education from medical providers reported greater healthcare responsibility. Provider-led transition education is needed for college students without complex medical needs. Implications for Impact Statement: This study suggests that college students without complex medical conditions experience gaps in transition preparation. Although half reported talking to their medical provider about transition to adult care, many desired more support, with the greatest difficulty reported in learning to manage health insurance.

6.
J Psychosom Res ; 165: 111143, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36628854

RESUMO

OBJECTIVE: Youth newly diagnosed with inflammatory bowel diseases (IBD) may be physically impacted by their disease and experience increased psychological stress. Stress is known to relate to greater reported IBD symptoms, but little is known about the longitudinal experience of stress and clinical symptoms of youth newly diagnosed with IBD. METHODS: Fifty-seven children (Mage = 14.26, range 8-17 years) diagnosed with IBD completed measures assessing psychological stress (PROMIS Psychological Stress Experiences), depressive symptoms (Children's Depression Inventory-2), and clinical disease symptoms (Self-Report Disease Activity) within 45 days of diagnosis and at 6-month and 1-year follow-ups. Group-based trajectory modeling was used to describe trajectory patterns of psychological stress over the first year of diagnosis and logistic regression identified predictors of group membership. RESULTS: Two distinct groups of psychological stress trajectories were identified: 1) low prevalence over the first year of diagnosis (51%) and 2) moderate and increasing prevalence (49%). Membership in the moderate and increasing psychological stress group was associated with female sex and greater IBD symptoms at diagnosis. CONCLUSION: Findings suggest roughly half of youth newly diagnosed with IBD would likely benefit from multidisciplinary assessment and intervention to promote adaptive stress management, given moderate and increasing stress levels. Future research is needed to evaluate specific intervention techniques most helpful to youth with IBD.


Assuntos
Depressão , Doenças Inflamatórias Intestinais , Criança , Humanos , Feminino , Adolescente , Depressão/diagnóstico , Depressão/psicologia , Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Modelos Logísticos , Autorrelato
7.
Pediatr Transplant ; 27(1): e14418, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36321186

RESUMO

BACKGROUND: Equitable access to pediatric organ transplantation is critical, although risk factors negatively impacting pre- and post-transplant outcomes remain. No synthesis of the literature on SDoH within the pediatric organ transplant population has been conducted; thus, the current systematic review summarizes findings to date assessing SDoH in the evaluation, listing, and post-transplant periods. METHODS: Literature searches were conducted in Web of Science, Embase, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases. RESULTS: Ninety-three studies were included based on pre-established criteria and were reviewed for main findings and study quality. Findings consistently demonstrated disparities in key transplant outcomes based on racial or ethnic identity, including timing and likelihood of transplant, and rates of rejection, graft failure, and mortality. Although less frequently assessed, variations in outcomes based on geography were also noted, while findings related to insurance or SES were inconsistent. CONCLUSION: This review underscores the persistence of SDoH and disparity in equitable transplant outcomes and discusses the importance of individual and systems-level change to reduce such disparities.


Assuntos
Transplante de Órgãos , Determinantes Sociais da Saúde , Criança , Humanos , Fatores de Risco
8.
J Pediatr Psychol ; 47(10): 1156-1166, 2022 10 19.
Artigo em Inglês | MEDLINE | ID: mdl-35665814

RESUMO

OBJECTIVE: A diagnosis of inflammatory bowel disease (IBD) in children can disrupt the family, including altered routines and increased medical responsibilities. This may increase parenting stress; however, little is known about parenting stress changes over the first year following an IBD diagnosis, including what demographic, disease, or psychosocial factors may be associated with parenting stress over time. METHODS: Fifty-three caregivers of children newly diagnosed with IBD (Mage = 14.17 years; Mdays since diagnosis = 26.15) completed parenting stress (Pediatric Inventory for Parents), child anxiety (Screen for Child Anxiety-Related Disorders), and child health-related quality of life (HRQOL; IMPACT) measures within 1 month of diagnosis and 6-month and 1-year follow-ups. Multilevel longitudinal models assessed change and predictors of parenting stress. RESULTS: Parenting stress was significantly associated with greater child anxiety and lower HRQOL at diagnosis (rs = 0.27 to -0.53). Caregivers of color and caregivers of female youth reported higher parenting stress at diagnosis (ts = 2.02-3.01). Significant variability and declines in parenting stress were observed across time (ts = -2.28 and -3.50). In final models, caregiver race/ethnicity and child HRQOL were significantly related to parenting stress over the first year of diagnosis (ts = -2.98 and -5.97). CONCLUSION: Caregivers' parenting stress decreases across 1 year of diagnosis. However, caregivers of color and those rating their child's HRQOL as lower may be at risk for greater parenting stress. More research is needed to understand why caregivers of color reported greater parenting stress compared to White caregivers. Results highlight the importance of providing whole-family care when a child is diagnosed with IBD.


Assuntos
Doenças Inflamatórias Intestinais , Poder Familiar , Adolescente , Criança , Feminino , Humanos , Poder Familiar/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/diagnóstico , Estresse Psicológico/psicologia , Cuidadores/psicologia , Pais/psicologia , Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/psicologia , Doença Crônica
10.
Pediatr Transplant ; 26(5): e14280, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35388604

RESUMO

BACKGROUND: Adolescent and young adult (AYA) solid organ transplant recipients experience worsening medical outcomes during transition to adult healthcare. Current understanding and definitions of transition success emphasize first initiation of appointment attendance in adult healthcare; however, declines in attendance over time after transfer remain possible, particularly as AYAs are further removed from their pediatric provider and assume greater independence in their care. METHODS: The current study assessed health-care utilization, medical outcomes, and transition success among 49 AYA heart, kidney, or liver recipients recently transferred to adult healthcare. Differences in outcomes were examined along two transition success criteria: (1) initial engagement in adult healthcare within 6 or 12 months of last pediatric appointment and (2) retention in adult healthcare over 3 years following last pediatric appointment. Growth curve modeling examined change in attendance over time. RESULTS: Successful retention in adult healthcare was significantly related to more improved clinical outcomes, including decreased number and duration of hospitalizations and greater medication adherence, as compared to initial engagement. Significant declines in appointment attendance over 3 years were noted, and individual differences in declines were not accounted for by age at transfer or time since transplant. CONCLUSIONS: Findings underscore support for AYAs after transfer, as significant declines in attendance were noted after initiating adult care. Clinical care teams should examine transition success longitudinally to address changes in health-care utilization and medical outcomes. Attention to interventions and administrative support aimed at maintaining or increasing attendance and identifying risk factors and intervention for unsuccessful transition is warranted.


Assuntos
Transplante de Órgãos , Transição para Assistência do Adulto , Adolescente , Criança , Humanos , Adesão à Medicação , Transplantados , Adulto Jovem
11.
Pediatr Transplant ; 26(2): e14176, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34723407

RESUMO

BACKGROUND: Pediatric solid organ transplant recipients are susceptible to posttraumatic stress symptoms (PTSS), given the presence of a life-threatening chronic medical condition and potential for complications. However, little is known about what individual characteristics are associated with an increased risk for PTSS among youth who received an organ transplant. The aim of the current study was to evaluate PTSS and its associations with executive functioning (EF) and personality (i.e., neuroticism and conscientiousness) among adolescents with solid organ transplants. METHODS: Fifty-three adolescents (Mage  = 16.40, SD = 1.60) with a kidney, heart, or liver transplant completed self-report measures of PTSS and personality, whereas caregivers completed a caregiver-proxy report of adolescent EF. RESULTS: Twenty-two percent of adolescent transplant recipients reported clinically significant levels of PTSS. Higher EF difficulties and neuroticism levels, and lower conscientiousness levels were significantly associated with higher PTSS (rs -.34 to .64). Simple slope analyses revealed that adolescents with both high EF impairment and high levels of neuroticism demonstrated the highest PTSS (t = 3.47; p < .001). CONCLUSIONS: Most adolescent transplant recipients in the present study did not report clinically significant levels of PTSS; however, those with high neuroticism and greater EF difficulties may be particularly vulnerable to PTSS following organ transplantation. Following transplantation, medical providers should assess for PTSS and risk factors for developing PTSS. Identification of those at risk for PTSS is critical, given the strong associations between PTSS and certain medical outcomes (e.g., medication nonadherence) among these youth.


Assuntos
Função Executiva , Transplante de Órgãos/psicologia , Personalidade , Psicologia do Adolescente , Transtornos de Estresse Pós-Traumáticos/etiologia , Transplantados/psicologia , Adolescente , Feminino , Humanos , Masculino
12.
Crit Rev Oncol Hematol ; 167: 103498, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34656745

RESUMO

It is critical to support adolescents and young adults (AYAs) with sickle cell disease (SCD) during transition to adult healthcare. We provide a systematic review of literature related to biopsychosocial influences on transition among AYAs with SCD. Data sources included studies published between January 2010 and May 2020. Forty-four studies were included. Biopsychosocial factors related to improved transition outcomes included older AYA age, greater disease severity, intact neurocognitive functioning, and greater pain coping skills. Financial and insurance barriers were noted. The importance of cultural considerations and provider communication were noted across two qualitative studies. Ten studies assessed efficacy of transition interventions, with 80 % resulting in improvements; however, retention in programs was low and gaps in knowledge and skills remained. Incorporation of early, ongoing assessments of transition readiness and barriers into culturally-tailored interventions aimed at improving transition outcomes is recommended. Examination of longitudinal relationships and interactions across biopsychosocial influences is needed.


Assuntos
Anemia Falciforme , Transição para Assistência do Adulto , Adolescente , Anemia Falciforme/epidemiologia , Anemia Falciforme/terapia , Humanos , Índice de Gravidade de Doença , Adulto Jovem
13.
Front Psychol ; 12: 670902, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34248766

RESUMO

Pediatric patients with inflammatory bowel disease (IBD) may experience chronic stress related to disease symptoms and treatment, with negative consequences to their health-related quality of life (HRQOL). Lower HRQOL among pediatric patients with IBD has been associated with worse disease-related symptoms and psychological functioning, while higher HRQOL has been associated with more adaptive coping with disease symptoms and treatment. In addition, patients' self-esteem may impact the selection and use of coping strategies through global cognitions about their abilities and perceived competence. The current study seeks to extend existing research on HRQOL in youth with IBD by examining cross-sectional associations among self-esteem and passive coping strategies. Youth ages 9-18 with IBD (n = 147) rated their HRQOL using a disease-specific measure, typical strategies used to cope with pain or GI symptoms, and their general self-esteem. Mediation analyses were performed using regression-based techniques and bootstrapping. Results indicated that greater self-esteem was positively associated with HRQOL but negatively associated with passive coping. Controlling for disease activity, age, and gender, significant indirect effects were found in the relation between self-esteem and HRQOL through passive coping. Multiple mediation analyses using the three passive coping subscales found that self-esteem was indirectly associated with HRQOL through its effects specifically on catastrophizing as a passive coping strategy. Results suggest that pediatric patients' general self-esteem can impact their HRQOL through passive coping and specifically, maladaptive cognitions (e.g., catastrophizing). Interventions aimed at addressing both self-esteem and catastrophizing as a passive coping strategy may offer promise for improving HRQOL in youth with IBD.

14.
Pediatr Transplant ; 25(4): e14001, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33704884

RESUMO

Ventricular assist device (VAD) therapy has provided pediatric patients with severe heart failure new therapeutic options. However, pediatric patients and families receiving VAD therapy also experience psychosocial challenges. No synthesis of the literature on psychosocial outcomes within the pediatric VAD population has been conducted; thus, the current review sought to systematically investigate the impact of pediatric VAD on patient, parent, and family psychosocial outcomes and assess variables associated with poorer outcomes. Literature searches were conducted in PsycInfo, PubMed, and Cumulative Index to Nursing and Allied Health Literature databases and full texts were assessed according to pre-established inclusion criteria. Main findings and study quality were reviewed. Sixteen studies were included in the present review. Findings highlighted the likelihood for psychological sequelae among pediatric patients and families receiving VAD therapy, including decreased psychological and emotional well-being, elevated stress, and difficulty coping with changes to family dynamics and responsibilities. Health-related quality of life was reported comparable to that of healthy peers and children with other cardiac conditions. Patients and families on VAD therapy experience significant difficulties in psychological well-being and challenges related to adjustment. The current review underscores the importance of ongoing support for families and continued assessment of psychosocial functioning across VAD support. Three critical periods for increased distress were identified: 1) immediately following VAD implantation, 2) discharge home and the weeks following discharge, and 3) long-term VAD therapy.


Assuntos
Insuficiência Cardíaca/cirurgia , Coração Auxiliar/psicologia , Qualidade de Vida/psicologia , Adolescente , Cuidadores/psicologia , Criança , Pré-Escolar , Família/psicologia , Indicadores Básicos de Saúde , Insuficiência Cardíaca/psicologia , Humanos , Lactente , Apoio Social , Estresse Psicológico/etiologia , Resultado do Tratamento
15.
Patient Educ Couns ; 104(8): 2089-2097, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33549384

RESUMO

OBJECTIVE: Adolescents and young adults (AYAs) with solid organ transplants must attain responsibility for healthcare tasks during transition to adult healthcare. However, healthcare systems often initiate transfer based on age and not independence in care. This study examines specific responsibilities distinguishing AYA organ transplant recipients reporting readiness to transfer. METHODS: 65 AYAs (ages 12-21) with heart, kidney, or liver transplants and 63 caregivers completed questionnaires assessing AYA's transition readiness, healthcare responsibility, and executive functioning. Categorizations included mostly/completely ready versus not at all/somewhat ready to transition; responsibility was compared between groups. RESULTS: 42% of AYAs and 24% of caregivers reported AYAs as mostly/completely ready to transition. AYAs mostly/completely ready reported similar routine healthcare responsibility (e.g., medication taking, appointment attendance), but greater managerial healthcare responsibility (e.g., knowing insurance details, appointment scheduling), compared to AYAs not at all/somewhat ready to transition. CONCLUSIONS: All AYAs should be competent in routine healthcare skills foundational for positive health outcomes. However, the managerial tasks distinguish AYAs perceived as ready to transfer to adult healthcare. PRACTICE IMPLICATIONS: Emphasis on developing responsibility for managerial tasks is warranted. The Hierarchy of Healthcare Transition Readiness Skills is a framework by which AYA responsibility can be gradually increased in preparation for transfer.


Assuntos
Transplante de Órgãos , Transição para Assistência do Adulto , Adolescente , Adulto , Cuidadores , Criança , Atenção à Saúde , Humanos , Transplantados , Adulto Jovem
16.
J Pediatr Psychol ; 45(5): 498-508, 2020 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-32374379

RESUMO

OBJECTIVE: To evaluate the factor structure, validity, and reliability of the Caregiver Medication Barriers to Adherence Scale (CMBAS), which assesses caregivers' barriers to facilitating medication adherence in adolescent and young adults (AYAs) with solid organ transplants. METHODS: The sample included 93 caregivers of AYAs ages 12-22 years who received a liver, kidney, or heart transplant. Caregivers completed the CMBAS and surveys to assess its validity, including internalizing symptoms, personality traits (i.e., neuroticism, conscientiousness), and AYAs' nonadherence to immunosuppressant medications. AYA nonadherence to tacrolimus was objectively assessed via the Medication Level Variability Index (MLVI). RESULTS: Confirmatory factor analyses of the CMBAS revealed a two-factor model: Caregiver Emotional Distress and Caregiver Cognitive Burden/Responsibility. Higher CMBAS scores were related to higher levels of caregiver internalizing symptoms (rs = .28 to .30), neuroticism (r = .27), and caregiver proxy-reported immunosuppressant nonadherence (r = .27), as well as lower levels of caregiver conscientiousness (rs = -.25 to -.26). The CMBAS was not associated with the MLVI (rs = -.13 to -.16). CONCLUSIONS: The CMBAS demonstrated reliability and validity for caregivers of AYAs with solid organ transplants. Findings support the use of the CMBAS as a brief clinical screening tool to identify caregivers' barriers to facilitating AYA medication adherence.


Assuntos
Cuidadores , Adesão à Medicação , Transplante de Órgãos , Adolescente , Adulto , Criança , Humanos , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto Jovem
17.
J Pediatr Psychol ; 45(5): 540-549, 2020 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-32291448

RESUMO

OBJECTIVE: Much of the extant literature on adherence barriers has focused on modifiable factors (e.g., knowledge, social support); however, less is known about how barriers may be associated with relatively stable constructs, such as personality traits. The current study examines associations between personality (i.e., agreeableness, conscientiousness, neuroticism) and adherence barriers in a group of adolescent and young adult (AYA) solid organ transplant recipients. Demonstrating associations between barriers and personality may help in understanding why barriers are stable over time. Additionally, different personality traits may relate to different types of barriers. METHODS: The sample included 90 AYAs (Mage = 17.31; SD = 2.05; 58% male) who received a kidney (n = 36), liver (n = 29), or heart (n = 25) transplant at least 1 year prior to study enrollment. AYAs completed the Agreeableness, Conscientiousness, and Neuroticism scales from the NEO Five-Factor Inventory and the Adolescent Medication Barriers Scale (AMBS). RESULTS: Lower levels of agreeableness and conscientiousness and higher levels of neuroticism were related to higher self-reported barrier scores (AMBS; r's = .31- .53, p's < .001). The relations differed by personality factor and barrier type. CONCLUSION: Adherence barriers showed medium to large associations with personality traits that are known to be relatively stable. Our findings indicate that the temporal stability of barriers to adherence may be due in part to their association with relatively enduring personality characteristics.


Assuntos
Adesão à Medicação , Personalidade , Transplantados , Adolescente , Feminino , Humanos , Masculino , Autorrelato , Adulto Jovem
18.
J Dev Behav Pediatr ; 40(7): 493-500, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31318780

RESUMO

OBJECTIVE: Autism spectrum disorder (ASD) screening completion rates are often low despite their validity and influence on earlier intervention and positive treatment outcomes. This study sought to examine the use of one ASD screening tool, the Modified Checklist for Autism in Toddlers-Revised (MCHAT-R), in a racially and ethnically diverse urban pediatric clinic to review potential disparities within screening rates and referral practices. METHODS: A retrospective chart review was conducted for children (N = 999) within the ages of 17 to 34 months seen for a well-child appointment at one of 3 pediatric clinics: a general pediatric clinic, resident pediatric clinic, and Hispanic pediatric clinic. RESULTS: MCHAT-R screening completion rates were low for all clinics. There were no significant differences in MCHAT-R screening completion based on ethnicity; however, the percentage of children screening positive on the MCHAT-R was significantly higher for Hispanic versus non-Hispanic children. Referral practices were highly variable across positive screenings, and few children received the appropriate combination of referrals. CONCLUSION: Ethnic disparities in ASD positive screening rates and inconsistent referrals represent a critical issue in current pediatric practice. There is a great need for the development of more culturally sensitive ASD screening instruments. Additionally, to help increase ASD screening rate and accuracy, as well as consistency in referrals, greater emphasis is needed on professional training, parental education, and technology use within pediatric clinics.


Assuntos
Centros Médicos Acadêmicos/estatística & dados numéricos , Instituições de Assistência Ambulatorial/estatística & dados numéricos , Transtorno do Espectro Autista/diagnóstico , Serviços de Saúde da Criança/estatística & dados numéricos , Disparidades em Assistência à Saúde/etnologia , Pediatras/estatística & dados numéricos , Transtorno do Espectro Autista/etnologia , Transtorno do Espectro Autista/terapia , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Programas de Rastreamento , Meio-Oeste dos Estados Unidos/etnologia , Encaminhamento e Consulta , Estudos Retrospectivos , População Urbana/estatística & dados numéricos
19.
J Pediatr Psychol ; 44(5): 542-556, 2019 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-30778579

RESUMO

OBJECTIVE: Parents and siblings of children with chronic illnesses are at increased risk for experiencing psychosocial difficulties. Therapeutic recreation camps have become increasingly popular among these families. The current systematic literature review provides a synthesis of research on how these camps impact the parents and siblings of children facing a variety of chronic health conditions. METHODS: Databases searched: PubMed, PsycInfo, SportDISCUS, and Health Source Nursing/Academic Edition. Inclusion criteria included publication in a peer-reviewed journal between January 2000 and May 2018, written in the English language, and assessment of parent, sibling, or family outcomes. RESULTS: Twenty-one studies were included. Results indicated that camp attendance relates to positive changes in parent and sibling psychosocial outcomes. Additionally, parents report camp to be a place of social support and respite from daily life, and siblings find camp to be enjoyable and a place of belonging. Given the limited number of methodologically sound studies examining family functioning, it is not yet clear the extent to which camp influences family-level outcomes. CONCLUSION: Overall, camp appears to have a positive impact on parents and siblings across chronic illness populations. Future research should specifically assess family outcomes, including communication and family functioning, and the impact of incorporating well-defined interventions and education programming into the traditional therapeutic recreation camp experience.


Assuntos
Doença Crônica/psicologia , Doença Crônica/reabilitação , Pais/psicologia , Recreação/psicologia , Irmãos/psicologia , Apoio Social , Adolescente , Criança , Família/psicologia , Feminino , Humanos
20.
Pediatrics ; 141(3)2018 03.
Artigo em Inglês | MEDLINE | ID: mdl-29437931

RESUMO

CONTEXT: Family-centered rounding (FCR) is of increasing importance in pediatric medicine. Although researchers have begun to understand the effect of FCR on providers and systematic health care outcomes, we provide a systematic review of the literature regarding families' experiences with FCR. OBJECTIVE: To systematically review patient and family experiences with pediatric FCR. DATA SOURCES: Our data sources included PubMed, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Scopus, and Embase. STUDY SELECTION: Inclusion criteria included publication in a peer-reviewed journal between January 2007 and February 2017, written in the English language, pediatric population (patients 0-21 years), and specific measurement of a families' experience with FCR. DATA EXRACTION: Data extracted were sample size, participating medical unit, measures of family experience, and overall results of family experience. RESULTS: Twenty-eight studies were included. It is unclear whether participation in FCR increases family satisfaction compared with standard rounds; however, families report a strong desire to participate in FCR. Family benefits of FCR included increased understanding of information and confidence in the medical team, as well as reduced parental anxiety. LIMITATIONS: There were only 2 studies in which researchers examined pediatric patients' experiences with FCR, and literature on the communication needs of non-English-speaking families was also limited. CONCLUSIONS: Overall, it is suggested that families positively perceive their experience with FCR, although more research is needed to determine if satisfaction is greater in FCR versus standard rounds as well as to better understand different perspectives of adolescent patients and non-English-speaking families.


Assuntos
Pais/psicologia , Pediatria/educação , Relações Profissional-Família , Visitas de Preceptoria , Ansiedade , Barreiras de Comunicação , Tomada de Decisões , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Equipe de Assistência ao Paciente , Satisfação do Paciente
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