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AIM: Managing type 1 diabetes in young children can cause significant stress for parents. Continuous glucose monitoring (CGM) may reduce parental burden. The Strategies to Enhance CGM Use in Early Childhood (SENCE) trial randomized parents of children (ages 2 to <8 years) with type 1 diabetes to CGM with family behavioural intervention (CGM + FBI), CGM alone (Standard-CGM) or blood glucose monitoring for 26 weeks before receiving CGM + FBI (BGM-Crossover). This report assesses changes in psychosocial outcomes for all groups over 52 weeks. METHODS: CGM + FBI (n = 45), Standard-CGM (n = 42) and BGM-Crossover (n = 44) participants completed psychosocial assessments at baseline, 26 weeks and 52 weeks. Repeated measures linear regression models evaluated change within and between treatment groups. RESULTS: The BGM-Crossover group reported improved diabetes burden (Δ -6.9, 95% CI [-11.3, -2.6], p = 0.003), fear of hypoglycaemia (Δ -6.4, CI [-10.1, -2.6], p = 0.002) and technology satisfaction (Δ 7.3, CI [2.4, 12.2], p = 0.005) from 26 to 52 weeks, similar to published findings in the CGM + FBI group over the first 26 weeks. The Standard-CGM group reported increased technology satisfaction (Δ 7.3, CI [0.6, 14.0], p = 0.027) from baseline to 52 weeks. The CGM + FBI group reported less diabetes burden and fear of hypoglycaemia from baseline to 52 weeks, but changes were not statistically significant. Scores from 26 to 52 weeks did not deteriorate. CONCLUSIONS: Parents demonstrated psychosocial benefits following FBI that appeared to maintain without additional intervention. CGM-focused education with behavioural support likely helps parents of young children with type 1 diabetes reduce burden and worry in the short- and long-term.
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Diabetes Mellitus Tipo 1 , Hipoglicemia , Criança , Pré-Escolar , Humanos , Glicemia , Automonitorização da Glicemia , Pais/psicologiaRESUMO
OBJECTIVE: A central part of family adjustment to a new diagnosis of type 1 diabetes (T1D) is integrating T1D management into the child's school/daycare. This may be particularly challenging for young children who rely on adults for their diabetes management. This study aimed to describe parent experiences with school/daycare during the first 1.5 years following a young child's T1D diagnosis. METHODS: As part of a randomized controlled trial of a behavioral intervention, 157 parents of young children with new-onset (<2 months) T1D reported on their child's school/daycare experience at baseline and at 9- and 15-month post-randomization. We used a mixed-methods design to describe and contextualize parents' experiences with school/daycare. Qualitative data were collected via open-ended responses, and quantitative data were collected from a demographic/medical from. RESULTS: While most children were enrolled in school/daycare at all time points, over 50% of parents endorsed that T1D affected their child's enrollment, rejection, or removal from school/daycare at 9 or 15 months. We generated five themes related to parents' school/daycare experiences: Child factors, Parent factors, School/Daycare factors, Cooperation between Parents and Staff, and Socio-historical factors. Parents of younger children and those with lower subjective socioeconomic status were significantly more likely to endorse challenges with school/daycare enrollment. CONCLUSIONS: School/daycare settings present challenges for parents of young children with T1D. Changes may need to occur across contexts to support early childhood education, including advocacy resources for parents to navigate school policies, increased training for school staff, and healthcare team outreach initiatives to parents and schools.
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Diabetes Mellitus Tipo 1 , Adulto , Criança , Pré-Escolar , Humanos , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/terapia , Pais , Instituições Acadêmicas , Classe Social , EstudantesRESUMO
OBJECTIVE: Parents of young children with new-onset type 1 diabetes (T1D) often experience significant distress and struggle with T1D management during a challenging developmental stage. The First STEPS (Study of Type 1 in Early childhood and Parenting Support) trial evaluated a stepped-care behavioral intervention comprising increasingly intensive intervention steps (peer parent coach, cognitive-behavioral counseling, consultations with diabetes educator and psychologist) based on need. The intervention improved parental depressive symptoms compared to usual care. Subsequently, we examined parent satisfaction with the intervention to guide potential implementation and refinement for future trials. METHODS: Participants were 157 parents of young children newly diagnosed with T1D. At 9 months post randomization, n = 153 completed satisfaction questionnaires and n = 17 completed qualitative interviews. Satisfaction ratings about trial procedures and each intervention step were summarized. We used thematic analysis with the interview transcripts to generate themes related to participants' experiences in the trial overall and intervention specifically. We explored differences in themes between participants who did versus did not respond to the intervention and among those who experienced different intervention steps. RESULTS: Most participants in both arms rated study participation and methods positively (>95%), and those completing interviews described high satisfaction with study procedures overall, retention incentives, and contact with study staff. Intervention participants' satisfaction ratings were high across steps. Two qualitative themes reflected satisfaction with the intervention enhancing self-efficacy and social support. CONCLUSIONS: High satisfaction suggests implementing a stepped-care behavioral intervention as part of routine clinical care following T1D diagnosis would be well received.
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Diabetes Mellitus Tipo 1 , Humanos , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 1/psicologia , Terapia Comportamental , Pais/psicologia , Poder Familiar , Satisfação PessoalRESUMO
AIMS: Individuals with type 1 diabetes (T1D) experience greater sleep disturbances than people without diabetes. However, the nature, causes and effects of sleep disruption in individuals with T1D and their family are not well understood. The purpose of this study was to explore and characterise the perspectives of parents, partners and individuals with diabetes about T1D-related sleep issues. METHODS: Participants included 44 youth and adults with T1D (ages 9-69), 24 parents of youth with T1D, and 14 partners of adults with T1D, recruited from diabetes clinics at two academic medical centres in the Southwestern and Midwestern United States. Semi-structured qualitative interviews were transcribed verbatim, coded and analysed using hybrid thematic analysis. RESULTS: We identified two central themes: Emotional Distress and Sleep Disruption. Each theme had multiple subthemes, and the two central themes were related to one another via a shared subtheme, Worry Impacting Sleep. CONCLUSIONS: Complex T1D-related emotional and behavioural factors both contributed to and resulted from sleep difficulties. Diabetes care providers should routinely assess for sleep concerns in people with T1D and their parents and partners. It may be important to consider both diabetes-related causes of sleep disruptions and potential impacts on self management and emotional functioning.
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Diabetes Mellitus Tipo 1 , Autogestão , Transtornos do Sono-Vigília , Adolescente , Adulto , Idoso , Criança , Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/psicologia , Humanos , Pessoa de Meia-Idade , Pais/psicologia , Pesquisa Qualitativa , Autogestão/psicologia , Sono , Transtornos do Sono-Vigília/epidemiologia , Transtornos do Sono-Vigília/etiologia , Adulto JovemRESUMO
BACKGROUND: Despite the known challenges of parental adjustment to new-onset type 1 diabetes (T1D) in young children, little is known about parental sleep soon after diagnosis. METHODS: Parents (n = 157) of young children (4.5 ± 1.6 years) with new-onset T1D (29 ± 15 days) self-reported their sleep (Pittsburgh Sleep Quality Index, PSQI) at the baseline of a behavioral randomized control trial. We examined sleep patterns and relations with continuous glucose monitor (CGM) use. RESULTS: Over two-thirds (68.8%) reported poor sleep quality (PSQI > 5, M = 8.3 ± 4.1). The mean reported sleep duration was 5.9 ± 1.4 h/night. PSQI scores did not significantly differ by CGM use. CONCLUSIONS: Sleep disruption is a pervasive self-reported problem among parents of young children emerging early after the T1D diagnosis. Healthcare providers should discuss parental sleep as part of diabetes care soon after diagnosis. Further interventions targeting parental sleep may be of benefit.
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Diabetes Mellitus Tipo 1 , Glicemia , Automonitorização da Glicemia , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/complicações , Diabetes Mellitus Tipo 1/diagnóstico , Humanos , Pais , SonoRESUMO
OBJECTIVE: Eighteen percent of new diagnoses of type 1 diabetes (T1D) occur in children ages 9 and younger, and the burden of diabetes management in young children predominantly falls on parents. Despite the significant amount of information parents must learn and implement quickly after diagnosis, little research has examined diabetes self-efficacy in parents of young children soon after diagnosis in a longitudinal manner. The current study examined changes in parent diabetes self-efficacy over time, and parent depressive symptoms and stress soon after child T1D diagnosis as predictors of parent diabetes self-efficacy at 12- and 18-months post-diagnosis. RESEARCH DESIGN AND METHODS: One hundred fifty-seven primary caregivers (91.7% female, 62.2% White, Non-Hispanic) of young children (Mage = 4.47 ± 1.65 years, 54.8% female, 60% White, Non-Hispanic) were recruited within 2 months of their child's T1D diagnosis from two pediatric hospitals in the United States as part of a randomized clinical trial. Parents self-reported on their diabetes self-efficacy, depressive symptoms, and stress and at baseline (Mdays since diagnosis = 29) and on parent diabetes self-efficacy again 12- and 18-months post-diagnosis. RESULTS: Parent diabetes self-efficacy significantly improved from baseline to 12-months and 18-months post-diagnosis (p < 0.05). Parents exhibiting clinically elevated levels of depressive symptoms and stress at baseline had significantly lower parent diabetes self-efficacy 12- and 18-months post-diagnosis compared to parents with normal levels of depressive symptoms and stress. CONCLUSIONS: Brief interventions for parents with clinically elevated depressive symptoms and stress soon after their child's diagnosis may improve parents' diabetes self-efficacy and ultimately support the management of their child's diabetes.
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Diabetes Mellitus Tipo 1 , Autoeficácia , Criança , Pré-Escolar , Depressão/diagnóstico , Depressão/epidemiologia , Depressão/etiologia , Diabetes Mellitus Tipo 1/diagnóstico , Diabetes Mellitus Tipo 1/terapia , Feminino , Humanos , Masculino , Pais , AutorrelatoRESUMO
BACKGROUND: Despite potential glycemic benefits of continuous glucose monitor (CGM) use in young children with type 1 diabetes, psychosocial and behavioral challenges may interfere with sustained use. We developed a 5-session family behavioral intervention (FBI) to support CGM use. OBJECTIVE: We report on the multi-step development of the FBI, training interventionists, implementation in a 14-site clinical trial, and participant satisfaction. METHODS: A multidisciplinary team created the FBI based on mixed-methods (i.e., survey data, qualitative research) preliminary work with parents of young children. Investigators trained non-physician staff to deliver the 5 sessions per an intervention manual. Trial participants received the FBI either during the first (FBI group, n = 50) or second 6-months (Crossover group, n = 44) of the 1-year trial. Investigators listened to session recordings to rate intervention fidelity, and participants rated satisfaction with the FBI. RESULTS: The complete 5-session FBI was delivered to 89% of participants, in-person (73%) or by telephone (23%). Sessions lasted 23 min on average, and fidelity was high across sessions. Over 80% of participants rated very high satisfaction with all aspects of the FBI and offered few recommendations for improvement. CONCLUSIONS: Having been developed based on experiences and input of families of young children with type 1 diabetes, the FBI represented a novel behavioral approach to enhance sustained CGM use during a challenging developmental period. Evidence of strong feasibility and acceptability supports its potential for implementation in research and clinical care. As diabetes technologies evolve, the FBI may continue to be refined to address parents' most relevant concerns.
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Diabetes Mellitus Tipo 1 , Terapia Comportamental , Glicemia , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Humanos , Pais/psicologia , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Although mood and anxiety symptoms are common in youth with type 1 diabetes (T1D), little research has described their worries across developmental stages or the strategies they use to cope with these worries. This secondary data analysis aimed to describe and characterize common T1D-related worries and coping strategies from middle childhood through young adulthood. METHODS: Twenty-three youth (9 children, 7 adolescents, and 7 young adults) completed semistructured qualitative interviews about health-related quality of life. We coded interview transcripts using thematic analysis to generate common themes of diabetes-related worries and coping strategies. RESULTS: Participants' worries fell into four major themes: Managing Blood Glucose, Self-Efficacy for Diabetes Management, Interpersonal Relationships, and Lifestyle Impact, and eight youth denied having diabetes-related worries. Coping strategies fell into the three major themes: Attempts to Change Source of Worry, Attempts to Change Reactions to Worry, and Attempts to Orient Away from the Worry. CONCLUSIONS: Youths' worries about various aspects of living with and feeling able to self-manage diabetes are important to consider across pediatric development as they can impact youths' participation in daily activities and future plans. By adolescence, youth report longer-term worries about the health and lifestyle implications of diabetes. Youths' reported coping strategies are generally consistent with existing coping frameworks, though our data suggest some possible refinements. Social support emerged as an important coping strategy for all age groups. Thus, interventions supporting youth in building and strengthening their social networks may be particularly beneficial in helping youth cope with their diabetes-related worries across development.
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Diabetes Mellitus Tipo 1 , Adolescente , Adulto Jovem , Criança , Humanos , Adulto , Diabetes Mellitus Tipo 1/terapia , Qualidade de Vida , Glicemia , Adaptação Psicológica , AnsiedadeRESUMO
OBJECTIVE: To examine psychosocial, sociodemographic, medical, and coronavirus disease 2019 (COVID-19) experiences as correlates of COVID-19 vaccination intentions among parents of children with type 1 diabetes (T1D). METHODS: 121 parents of children with T1D (Mchild age = 7.78 ± 1.70; MA1c = 8.3% ± 1.5%) in the mid-Atlantic and Southwest regions completed self-report measures in February to March 2021. RESULTS: Parents' general vaccination behaviors and attitudes were associated with COVID-19 vaccination intentions. Child insurance type and social distancing adherence were associated with vaccination intention in the Southwest site. Higher A1c was associated with lower intention. Vaccine safety was the top reported concern. CONCLUSIONS: COVID-19 vaccination intentions are important to address in parents of youth with health conditions.
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COVID-19 , Diabetes Mellitus Tipo 1 , Adolescente , COVID-19/prevenção & controle , Vacinas contra COVID-19 , Criança , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Intenção , Pais/psicologia , Vacinação/psicologiaRESUMO
OBJECTIVE: The COVID-19 pandemic increased economic, social, and health stressors for families, yet its impacts on families of youth with chronic conditions, such as type 1 diabetes (T1D), are not well understood. Self-regulation (SR)-or the capacities to control emotions, cognition, and behavior in response to challenge-is known to support T1D management and coping in the face of stress. Strong SR may have protected youth with T1D from the impacts of pandemic-related stressors. This study compared youth and parent emotional functioning and T1D management before and after the pandemic's onset in relation to family pandemic-related stress and youth SR. METHODS: Parents of youth with T1D (N = 88) and a subset of these youth (N = 43; Mean age 15.3 years [SD 2.2]) completed surveys regarding SR, stress, emotional functioning, and T1D-related functioning prior to and after March 2020. Outcomes were compared using mixed effects models adjusting for covariates. Family pandemic-related stress experiences and youth SR were tested as moderators of change. RESULTS: Parents' responsibility for T1D management increased across pandemic onset and their diabetes-related distress decreased. Family pandemic-related stress was associated with decreased emotional functioning over time. Youth SR, particularly emotional and behavioral aspects, predicted better emotional and T1D-related functioning. DISCUSSION: While youth with T1D whose families experienced higher pandemic-related stress had poorer adjustment, strong emotional and behavioral SR appeared to protect against worsening youth mood and adherence across pandemic onset. Both social-contextual and individual factors are important to consider when working with families managing T1D.
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COVID-19 , Diabetes Mellitus Tipo 1 , Autocontrole , Adolescente , Diabetes Mellitus Tipo 1/psicologia , Humanos , Pandemias , Fatores de ProteçãoRESUMO
PURPOSE OF REVIEW: The manuscript reviews the extant literature on suicide-related thoughts and behaviors among youth and young adults with pediatric diabetes. This evidence is presented within the context of current theories of the etiology of suicidal behavior to highlight how diabetes may contribute to suicide risk, and to support providers in understanding the interplay between pediatric diabetes and suicide risk. The manuscript also reviews evidence-based approaches to suicide prevention suitable for use in pediatric healthcare settings, with suggestions for their application to this unique population. RECENT FINDINGS: Several recent studies identify heightened rates of suicidal ideation, suicide attempts, and suicide among youth and young adults with pediatric diabetes, as compared with their peers without diabetes. Evidence-based suicide prevention approaches frequently emphasize the importance of reducing suicidal youths' access to potentially lethal means for suicidal behavior. This approach may require special considerations for youth with pediatric diabetes, due to their need to carry sufficient quantities of insulin and the dangers of inaccurate insulin dosing and/or overdose. Suggestions for suicide prevention for this population include risk screening as part of routine diabetes care, early prevention, education for youth and families, and provider awareness of risk factors, warning signs, and implications for diabetes care. Youth and young adults with diabetes reported elevated rates of suicide-related behaviors as compared with their peers without diabetes. Existing suicide prevention approaches may require substantial adaptation for use with youth and young adults with diabetes. Further research is needed to examine how to best prevent suicidal behaviors among this population.
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Diabetes Mellitus Tipo 1 , Adolescente , Criança , Diabetes Mellitus Tipo 1/complicações , Humanos , Programas de Rastreamento , Fatores de Risco , Ideação Suicida , Tentativa de Suicídio , Adulto JovemRESUMO
BACKGROUND: Emerging adulthood presents unique challenges for type 1 diabetes (T1D) management. Barriers to achieving optimal diabetes outcomes have been studied but less is known about how emerging adults overcome these challenges. Characterizing emerging adults' protective factors may help guide T1D care during this developmental period. We anticipated identifying social, cognitive, and behavioral protective factors and were open to additional themes. METHODS: We analyzed transcripts from semi-structured qualitative interviews with 62 emerging adults (age 18-24 years) with T1D using hybrid thematic analysis. Interviews queried about participants' perspectives on diabetes management challenges, how they overcome challenges, and diabetes resilience. RESULTS: We categorized responses into three types of protective factors: (a) Social: Interpersonal strategies such as obtaining tangible support (especially from parents) and emotional support from friends, medical professionals, and community leaders. (b) Cognitive: Believing one can live a "normal" life with T1D, benefit-finding, and viewing diabetes management as an important part of life. (c) Behavioral: Proactively planning for diabetes challenges, maintaining a consistent routine while allowing for flexibility, balancing diabetes and non-diabetes activities, and using diabetes-specific and general technologies to support self-management. CONCLUSIONS: The adaptive approaches emerging adults with T1D use to handle the challenges of diabetes include seeking interpersonal support, managing their thoughts about T1D, and taking specific actions to prevent or resolve challenges. Helping emerging adults identify and strengthen their protective factors has potential to affect clinical outcomes. Strengths-based assessment and clinical attention to protective factors may prepare adolescents to successfully manage the challenges of transition to adult care.
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Adaptação Psicológica , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Resiliência Psicológica , Autogestão , Transição para Assistência do Adulto , Adolescente , Fatores Etários , Feminino , Humanos , Masculino , Autoimagem , Apoio Social , Adulto JovemRESUMO
OBJECTIVE: The current study explored pre-pandemic sociodemographics, medical characteristics, social/family support, and mood symptoms, and current COVID-19 experiences as predictors of mood, positive/negative diabetes-specific experiences, and COVID-19-specific distress among parents of children with type 1 diabetes during the COVID-19 pandemic. We hypothesized that parents from marginalized backgrounds, youth with higher pre-pandemic A1c and no CGM use, parents with lower pre-pandemic social/family support and more pre-pandemic mood/anxiety symptoms, and those with more negative COVID-19 experiences would have more depressive symptoms, fewer positive and more negative diabetes-specific experiences, and more COVID-19-specific distress during the initial months of the pandemic. RESEARCH DESIGN AND METHODS: Participants were parents of early school-age children with type 1 diabetes (n = 100; 65% non-Hispanic, white, 92% mothers, 75% married; Mchild age = 6.74 ± 1.59 years) who had completed a behavioral intervention trial ≥6 months ago and were re-contacted in June/July 2020 to report on their COVID-19 pandemic experiences and parent psychosocial outcomes. Pre-pandemic parent mood/anxiety symptoms, family/social support, and children's medical characteristics (CGM use; MA1C = 8.17% ± 1.40%) were assessed M = 1.45 ± 0.59 years prior. RESULTS: More pre-pandemic social support predicted fewer depressive symptoms, more positive diabetes-specific experiences, and less COVID-19-specific distress during the pandemic. More pre-pandemic depressive symptoms predicted more depressive symptoms during the pandemic. More life disruptions due to the pandemic were associated with more negative diabetes-specific experiences and more COVID-19-specific distress. Parents of color had more negative diabetes-specific experiences. CONCLUSIONS: Social support may be particularly important to assess and address through intervention. Pediatric diabetes care providers should monitor parent experiences in relation to children's diabetes management. ClinicalTrials.gov identifier: NCT02527525.
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Ansiedade/psicologia , COVID-19/psicologia , Diabetes Mellitus Tipo 1/psicologia , Pandemias , Pais/psicologia , SARS-CoV-2 , Estresse Psicológico/psicologia , Ansiedade/epidemiologia , Ansiedade/etiologia , COVID-19/complicações , COVID-19/epidemiologia , Criança , Pré-Escolar , Comorbidade , Diabetes Mellitus Tipo 1/epidemiologia , Feminino , Seguimentos , Humanos , Lactente , Masculino , Poder Familiar/psicologia , Estudos Retrospectivos , Instituições Acadêmicas , Apoio Social , Estresse Psicológico/etiologia , Fatores de Tempo , Estados UnidosRESUMO
Living with and managing diabetes is challenging during young adulthood, and social support may help relieve or minimize the burdens young adults with diabetes experience. This article reviews the types and sources of support young adults with diabetes receive and their associations with behavioral, psychosocial, and glycemic outcomes. Intervention research integrating social support and future directions for care are discussed.
RESUMO
There are significant stressors related to parenting a young child with newly diagnosed type 1 diabetes (T1D). Despite these challenges, there are not yet clearly defined interventions to help promote psychological health and adherence for families with young children with T1D. First STEPS is a tailored stepped care design intervention to positively impact parents' emotional functioning and children's glycemic control in young children newly diagnosed with T1D. The First STEPS intervention is derived from a combination of Cognitive Behavioral Theory and Social Cognitive Theory to support family adjustment to T1D, promote parental mastery over T1D tasks, increase coping skills to manage stressors associated with T1D, and build on the strengths of families newly diagnosed with T1D to help them achieve positive health and wellbeing outcomes. We present details about the intervention and describe two pilot participants as case studies. Results indicated that the treatment and delivery model were acceptable to the pilot participants, as evidenced by treatment completion and satisfaction ratings. Future directions for this work include testing the efficacy of this new treatment in a randomized controlled trial.
RESUMO
PURPOSE OF REVIEW: Youth with strong self-regulation (SR), or the ability to manage thoughts, emotions, and behaviors, engage in more effective type 1 diabetes (T1D) management. However, while parent support and engagement are critical to ensuring positive youth T1D outcomes, it is rarely considered that parents' SR may also influence youth T1D management. If this is the case, novel interventions to improve parents' SR or ensure adequate support for parents with SR challenges offer great potential to improve family functioning and youth T1D management. RECENT FINDINGS: Theoretical and preliminary empirical evidence suggests that parental SR impacts family processes that support youth T1D treatment regimen adherence. Furthermore, parent and youth SR likely interact, with high parent SR enhancing the positive effects of high youth SR or compensating for low youth SR. Continued research is needed to better understand the ways in which parent SR matters to youth T1D management and identify how to support improvements in T1D management among families of parents with low SR.
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Diabetes Mellitus Tipo 1 , Autocontrole , Adolescente , Diabetes Mellitus Tipo 1/terapia , Humanos , PaisRESUMO
BACKGROUND: Diabetes distress, the emotional burden of caring for the chronic demands of diabetes, has not been well described in children and preadolescents with type 1 diabetes (T1D). This gap is particularly evident among youth of lower socioeconomic status (SES) and/or racial/ethnic minorities. Since these groups are more likely to have disparities in health outcomes and healthcare related to their diabetes, factors that could potentially improve glycemic and other diabetes-related outcomes should be studied closely. OBJECTIVE: We hypothesized that (a) diabetes distress levels would be elevated in children with markers of lower SES and those of racial/ethnic minorities, and (b) higher HbA1c would be predicted by higher diabetes distress levels, when controlling for race/ethnicity, SES, and clinical covariates. METHODS: One hundred and eighty-seven youth age 9 to 13 with T1D completed age-appropriate Problem Areas in Diabetes (PAID) questionnaires using a web-based portal during routine diabetes care visits. RESULTS: PAID scores were significantly elevated in youth who had surrogate markers of lower SES and who were from racial/ethnic minority backgrounds. In multivariate models including race/ethnicity or the SES variables and controlling for clinical covariates, the factor most predictive of higher HbA1c was elevated PAID score. CONCLUSIONS: Diabetes distress is elevated in a younger population of children with T1D who are from racial/ethnic minority backgrounds or have markers of lower SES. Interventions that target distress and/or expand the safety net in these populations could potentially improve glycemic outcomes.
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Negro ou Afro-Americano/psicologia , Diabetes Mellitus Tipo 1/sangue , Hemoglobinas Glicadas/metabolismo , Hispânico ou Latino/psicologia , Angústia Psicológica , Fatores Socioeconômicos , Adolescente , Criança , Diabetes Mellitus Tipo 1/etnologia , Diabetes Mellitus Tipo 1/psicologia , Feminino , Humanos , Masculino , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Across all age groups, management of type 1 diabetes (T1D) places substantial responsibility and emotional burden upon families. This study explored parent perceptions of the burdens of caring for very young children with T1D. METHODS: Semi-structured qualitative interviews were conducted with parents (85% mothers) of 79 children with T1D, aged 1 to <8 years old, from four diverse pediatric diabetes clinical centers. Interviews were transcribed, coded, and analyzed using hybrid thematic analysis to derive central themes. RESULTS: Youth (77% White) had T1D for ≥6 months: age (M ± SD) 5.2 ± 1.5 years, diabetes duration 2.4 ± 1.3 years, and A1c 63 ± 10 mmol/mol (7.9 ± 0.9%); 66% used an insulin pump and 61% used CGM. Three major themes emerged related to diabetes burdens: (a) the emotional burden of diabetes on themselves and their children, (b) the burden of finding, training, and trusting effective secondary caregivers to manage the child's diabetes, and (c) suggestions for how more comprehensive, personalized diabetes education from healthcare providers for parents and secondary caregivers could help reduce parent burden and worry. CONCLUSIONS: In families with very young children with T1D, parental perceptions of the burden of managing diabetes are common and could be mitigated by tailored education programs that increase parent knowledge, bolster parents' confidence in themselves, and increase trust in their secondary caregivers to manage diabetes. Reduced parental burden and increased caregiver knowledge may positively impact child's glycemic control, as well as improve parent and child quality of life.
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Efeitos Psicossociais da Doença , Diabetes Mellitus Tipo 1/psicologia , Pais/psicologia , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/terapia , Feminino , Humanos , Hipoglicemiantes/administração & dosagem , Insulina/administração & dosagem , Entrevistas como Assunto , Masculino , Poder Familiar , Angústia Psicológica , Pesquisa QualitativaRESUMO
PURPOSE OF REVIEW: Transition-age patients with history of a pediatric brain tumor are at significant risk for difficulties transitioning to adulthood. We review current transition models and the potential role of neuropsychology in the transition process for adolescent and young adult brain tumor survivors. RECENT FINDINGS: Several recently developed healthcare transition models include consideration of patients' cognitive and functional capacities, yet currently available transition readiness tools are limited in scope and do not possess adequate normative data across pediatric medical populations. We explore the potential utility and added benefit of systematically incorporating neuropsychology in the transition process for pediatric brain tumor survivors. The literature supports increased evaluation and intervention targeted at psychosocial barriers to transition. Based on these findings, we propose a family-centered and multidisciplinary care model that promotes both medical and broader psychosocial transition processes. Neuropsychology is ideally suited to assess the wide-ranging areas encompassed in transition readiness and to facilitate the transition process.
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Neoplasias Encefálicas/terapia , Neuropsicologia , Transição para Assistência do Adulto , Adolescente , Neoplasias Encefálicas/psicologia , Humanos , Modelos Psicológicos , Testes Neuropsicológicos , Guias de Prática Clínica como Assunto , Papel Profissional , Sobreviventes/psicologia , Transição para Assistência do Adulto/normas , Adulto JovemRESUMO
OBJECTIVE: This study aimed to describe parents' perceptions of the factors that facilitate or are barriers to their involvement in children's type 1 diabetes (T1D) management among African American and Latino parents. METHODS: African American and Latino parents (N = 28) of 5- to 9-year-old children with T1D completed audio-recorded, semi-structured interviews that were transcribed and analyzed using thematic analysis. Themes were identified that aligned with the theoretically-derived Capability-Opportunity-Motivation-Behavior (COM-B) framework. RESULTS: Parents described Capability-based facilitators of parent involvement, including positive stress management, religious/spiritual coping, organizational/planning skills, and diabetes knowledge. Capability-based barriers included child and parent distress. Interpersonal relationships, degree of flexibility in work environments, and access to diabetes technologies were both Opportunity-based facilitators and barriers; and Opportunity-based barriers consisted of food insecurity/low financial resources. Parents' desire for their child to have a "normal" life was described as both a Motivation-based facilitator and barrier. CONCLUSIONS: African American and Latino families described helpful and unhelpful factors that spanned all aspects of the COM-B model. Reinforcing or targeting families' unique psychological, interpersonal, and environmental strengths and challenges in multilevel interventions has potential to maximize parental involvement in children's diabetes management.