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1.
Pediatr Blood Cancer ; : e30993, 2024 Apr 11.
Artículo en Inglés | MEDLINE | ID: mdl-38605546

RESUMEN

BACKGROUND: Siblings of youth with cancer have heightened risk for poor long-term psychosocial outcomes. Although sibling psychosocial care is a standard in pediatric oncology, this standard is among those least likely to be met. To address barriers to providing sibling services, a blueprint for systematic psychosocial screening and support of siblings was developed based on feedback from a national sample of psychosocial providers. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) of various disciplines working in US pediatric cancer centers, varied in size, type, and extent of sibling support. Interviews queried providers' suggestions for the future of sibling psychosocial care and impressions of a blueprint for sibling service delivery, which was iteratively refined based on respondents' feedback. Interviews were analyzed using applied thematic analysis. RESULTS: Based on existing literature and refined according to providers' recommendations, the Sibling Services Blueprint was developed to provide a comprehensive guide for systematizing sibling psychosocial care. The blueprint content includes: (i) a timeline for repeated sibling screening and assessment; (ii) a stepped model of psychosocial support; (iii) strategies for circumventing barriers to sibling care; and (iv) recommendations for how centers with varying resources might accomplish sibling-focused care. The blueprint is available online, allowing providers to easily access and individualize the content. Providers indicated enthusiasm and high potential utility and usability of the blueprint. CONCLUSIONS: The Sibling Services Blueprint may be a useful tool for systematizing sibling psychosocial care, promoting wider availability of sibling-focused services, and addressing siblings' unmet needs.

3.
J Autism Dev Disord ; 2023 Dec 20.
Artículo en Inglés | MEDLINE | ID: mdl-38117420

RESUMEN

The adult service system does not adequately meet the needs of autistic adults, prompting families to continue their supportive roles. Siblings frequently assume these roles when parents are no longer able to do so, often without preparation or planning. We received feedback on the proposed Siblings FORWARD (Focusing on Relationships, Well-being, and Responsibility aheaD) program concept, which would involve 6-7 individualized sessions over ~ 3 months and would facilitate siblings' proactive future planning involvement with their autistic family member. Siblings FORWARD would bolster siblings' skills, knowledge, and self-efficacy to engage in future planning with their family members. We report on perceived need for a sibling program and feedback on the proposed program goals, content, and design. Adult siblings (n = 13), autistic adults (n = 6), and service providers (n = 17) participated in individual interviews or focus groups. Data were systematically coded and analyzed using directed content analysis. Siblings, autistic adults, and service providers expressed high enthusiasm for the Siblings FORWARD concept. Participants indicated that the combination of skill-building and education would promote continued, collaborative future planning that persists after the formal program ends. They had positive impressions of the program concept, goals, content, and design, including the telehealth delivery model. Siblings and autistic adults reported wanting to participate in Siblings FORWARD. This uniform, strong enthusiasm for the Siblings FORWARD concept warrants moving forward to examine preliminary acceptability and feasibility. Ultimately, greater sibling involvement in family future planning may improve autistic adults' functioning through improved continuity of care and support across adulthood.

4.
J Fam Psychol ; 37(8): 1190-1199, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37676170

RESUMEN

A child's death from cancer may increase the risk for poor self-worth in bereaved siblings. Furthermore, bereaved parents may experience depressive symptoms and communicate differently with their surviving children. However, limited research has examined family factors associated with self-worth in bereaved siblings. Thus, we examined: (a) differences in parental depressive symptoms, parent-child communication, and sibling self-worth between bereaved and nonbereaved families and (b) indirect effects of parental depressive symptoms and communication quality on the association between bereavement and sibling self-worth. Bereaved parents and siblings were recruited 3-12 months after a child's death from cancer. Bereaved (n = 72) and nonbereaved families of classmates (n = 58) completed home-based questionnaires upon enrollment (T1), and 48 bereaved and 45 nonbereaved families completed 1-year follow-up (T2). Relative to controls at T1 and T2, bereaved mothers, but not fathers, reported more depressive symptoms. Bereaved siblings reported poorer maternal and similar paternal communication, and similar levels of self-worth compared to controls. Both cross-sectional and longitudinal serial mediation models for mothers were significant. Bereaved mothers were at greater risk for depressive symptoms, which adversely affected sibling self-worth over time through disrupted mother-child communication. The father sample was limited, but the cross-sectional model was nonsignificant. Mothers and fathers may grieve differently and may require different therapeutic approaches. Family-centered interventions should target bereaved mothers' emotional adjustment and communication to enhance sibling self-worth. Additionally, clinicians should bolster other sources of support for bereaved siblings to promote adaptive outcomes. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Asunto(s)
Neoplasias , Hermanos , Masculino , Femenino , Humanos , Hermanos/psicología , Depresión/etiología , Depresión/psicología , Estudios Transversales , Padres/psicología , Madres , Neoplasias/psicología , Comunicación
5.
Pediatr Blood Cancer ; 70(10): e30539, 2023 10.
Artículo en Inglés | MEDLINE | ID: mdl-37470711

RESUMEN

BACKGROUND: Children with sickle cell anemia (SCA) have substantial medical needs and more unmet basic needs than children with other medical conditions. Despite a recent focus on social determinants of health (SDoH), there remains an incomplete understanding of the processes linking SDoH and disease management, particularly for youth with SCA. This study elucidated these processes and identified ways to mitigate deleterious effects of adverse SDoH on SCA management. METHODS: Parents/primary caregivers (N = 27) of children with SCA (≤12 years old) participated in semi-structured interviews regarding SCA management and SDoH and completed quantitative measures of basic needs. Qualitative data were systematically coded and analyzed using applied thematic analysis. Quantitative data were presented descriptively. RESULTS: Three qualitative themes were identified. First, SCA management is bidirectionally linked with the social environment, whereby challenges of SCA management can hinder basic needs from being met, and unmet basic needs and financial hardship hinder SCA management. Second, due to limited resources, parents/caregivers are faced with difficult choices between prioritizing basic needs versus SCA management. Third, addressing material, emotional, and informational needs may improve SCA management. Quantitatively, 73% of families endorsed ≥1 basic need, including food insecurity (42%), housing instability (62%), and/or energy insecurity 19% (vs. 20%). CONCLUSION: Despite documented associations, there remains a poor understanding of the processes linking SDoH and health. Findings underscore how day-to-day conditions undermine the management of SCA treatments, symptoms, and complications, limiting treatment effectiveness. Understanding these processes may inform family-centered, health equity interventions and policies to improve living conditions, disease management, and health outcomes.


Asunto(s)
Anemia de Células Falciformes , Determinantes Sociales de la Salud , Adolescente , Niño , Humanos , Padres , Investigación Cualitativa , Anemia de Células Falciformes/terapia , Encuestas y Cuestionarios
6.
J Pediatr Psychol ; 48(8): 688-699, 2023 08 29.
Artículo en Inglés | MEDLINE | ID: mdl-37354552

RESUMEN

OBJECTIVE: Identify and describe trajectories of cancer-related posttraumatic stress symptoms (PTSS) among siblings of children with cancer within two years of diagnosis. METHOD: Siblings (aged 8-18; M = 11.2 years) across the United States, and for each, one caregiver, were recruited for a cohort sequential longitudinal study with three data collection points six months apart beginning at 6- or 12-months after cancer diagnosis. Siblings (N = 229; 42% of eligible/approached; 53% identifying as female; 68% identifying as non-Hispanic White) completed the Child Posttraumatic Stress Disorder Symptom Scale. Caregivers completed the Strengths and Difficulties Questionnaire (SDQ). Latent class growth analysis (LCGA) and growth mixture modeling (GMM) identified PTSS patterns across time. RESULTS: Fit statistics supported models with three to five PTSS trajectories. The three-class LCGA model included a large mild PTSS group (61%), a moderate PTSS group (35%), and a small (4%) stable severe PTSS group. The four-class LCGA and three- and four-class GMM included groups improving from moderate to mild PTSS (7-21%) and worsening to moderate PTSS across time (12-17%). Across models, siblings with mild PTSS had fewer caregiver-reported emotional and behavioral difficulties on the SDQ. CONCLUSIONS: A large group of siblings of children with cancer demonstrate resiliency, however, substantial subsets experience patterns of PTSS that include levels in the moderate-to-severe range during the first two years post-diagnosis. Future research should examine these patterns in more diverse/representative samples and identify factors associated with increasing and sustained severe PTSS to inform intervention targets and reduce cancer-related burden on families.


Asunto(s)
Neoplasias , Trastornos por Estrés Postraumático , Humanos , Niño , Femenino , Hermanos , Estudios Longitudinales , Trastornos por Estrés Postraumático/diagnóstico , Trastornos por Estrés Postraumático/psicología , Neoplasias/diagnóstico , Neoplasias/psicología , Emociones
7.
J Pediatr Psychol ; 48(7): 636-644, 2023 07 20.
Artículo en Inglés | MEDLINE | ID: mdl-37228163

RESUMEN

OBJECTIVE: Psychosocial screening is recommended to connect siblings of youth with cancer to psychosocial services, but the lack of validated sibling-specific screening tools is a barrier to routine screening. The current study aimed to validate and establish a clinical cutoff for the recently developed Psychosocial Assessment Tool (PAT) Sibling Module follow-up version to address this barrier. METHODS: Parents (N = 246) completed the PAT Sibling Module follow-up version for all siblings within their families ages 0-17 years (N = 458) at three time points between 6- and 24-month post-cancer diagnosis. For one target sibling within each family aged 8-17 years, parents also completed the Strengths and Difficulties Questionnaire, and the target sibling completed the Child PTSD Symptom Scale. Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity. Receiver operator characteristic analyses were used to establish a maximally sensitive and specific clinical cutoff. RESULTS: Internal consistency was acceptable for all age versions (Kuder-Richardson 20s ≥ 0.79), except for the ages 0-2 version, which had low internal consistency at 18 months post-diagnosis (Kuder-Richardson 20 = 0.57). Convergent (r values >0.7, p values <.001) and predictive (r values >0.6, p values <.001) validity were strong at each time point. An optimal clinical cutoff of 0.32 was identified (range: 0.00-1.00). CONCLUSIONS: The PAT Sibling Module follow-up version is a reliable and valid screener for sibling psychosocial risk following cancer diagnosis. Validation of a sibling-specific screener and establishment of a clinical cutoff are necessary first steps to addressing siblings' unmet psychosocial needs and improving trajectories of sibling functioning.


Asunto(s)
Neoplasias , Hermanos , Niño , Adolescente , Humanos , Hermanos/psicología , Psicometría , Estudios de Seguimiento , Estudios Transversales , Encuestas y Cuestionarios , Padres/psicología , Neoplasias/diagnóstico , Neoplasias/psicología
8.
J Racial Ethn Health Disparities ; 10(6): 3095-3106, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-36536165

RESUMEN

For Black children with sickle cell disease (SCD) and their families, high disease stigmatization and pervasive racism increase susceptibility to discrimination in healthcare settings. Childhood experiences of discrimination can result in medical nonadherence, mistrust of healthcare providers, and poorer health outcomes across the lifespan. Caregivers and medical providers are essential to childhood SCD management and are therefore well-positioned to provide insight into discrimination in the context of pediatric SCD. This mixed-methods study sought caregivers' and providers' perspectives on processes underlying discrimination and potential solutions to mitigate the negative effects of perceived discrimination among children with SCD. Caregivers (N = 27) of children with SCD (≤ 12 years old) and providers from their hematology clinics (N = 11) participated in individual semi-structured interviews exploring experiences of discrimination and daily SCD management and completed a quantitative measure of discrimination. Qualitative data were collected until themes reached saturation and subsequently transcribed verbatim, coded, and analyzed using applied thematic analysis. Quantitative and qualitative data converged to suggest the pervasiveness of discrimination in healthcare settings. Three qualitative themes emerged: (1) healthcare system factors underlie discrimination, (2) families' challenging interactions with providers lead to perceptions of discrimination, and (3) experiences of discrimination impact caregiver-provider interactions. Both caregivers and providers highlighted building trusting patient-provider relationships and encouraging patients' self-advocacy as means to reduce experiences and impacts of discrimination. These findings offer potential approaches to tangibly mitigate occurrences of discrimination in pediatric healthcare settings by trust building, accountability keeping, and fostering rapport to improve quality of care and pediatric SCD health outcomes.


Asunto(s)
Anemia de Células Falciformes , Racismo , Humanos , Niño , Cuidadores , Atención a la Salud , Personal de Salud , Anemia de Células Falciformes/terapia
9.
J Pediatr Hematol Oncol Nurs ; 40(1): 34-42, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36245365

RESUMEN

Background: Siblings of youth with cancer are at risk for psychosocial difficulties and report unmet needs. Supporting siblings is a psychosocial standard of care; however, many barriers prevent this standard from being fully achieved. Transdisciplinary team science has potential to generate novel, real-world solutions to complex research problems and can be beneficial to addressing sibling needs within pediatric hematology/oncology nursing. This process paper aims to present a guiding framework for transdisciplinary team science using the experiences of the Sibling Partnership for Advocacy, Research, and Care in Childhood Cancer (SPARCCC) as an exemplar. Methods: SPARCCC employed an established model of transdisciplinary team-based research, which consisted of four phases: development, consultation, implementation, and translation. This transdisciplinary team was comprised of international experts from a variety of disciplines, as well as siblings and families impacted by cancer. Results: SPARCCC held two summits, and team members developed ongoing collaborative efforts to advance advocacy, research, and support for siblings of youth with cancer. The team implemented the four phases of the transdisciplinary team-based framework and used an iterative process to build a shared perspective of the needs of siblings and take action. For instance, we completed a grant application, several manuscripts, and conference presentations to disseminate our findings and begin to advance a focused research agenda for sibling supportive care. Discussion: Transdisciplinary team science holds promise for tackling complex issues within pediatric hematology/oncology nursing research, particularly areas that are not well aligned with more traditional models and can be used to generate novel solutions.


Asunto(s)
Neoplasias , Hermanos , Niño , Adolescente , Humanos , Investigación Interdisciplinaria , Oncología Médica , Neoplasias/terapia
10.
Pediatr Blood Cancer ; 70(2): e30103, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36385588

RESUMEN

BACKGROUND: Although providing sibling psychosocial services is a standard of care in pediatric oncology, initial survey research suggests that this standard is rarely achieved and siblings' support needs remain unmet. Which sibling psychosocial services are available and how centers provide such services is unknown. To identify targetable services gaps, this qualitative study characterizes current sibling psychosocial care practices at select pediatric cancer centers across the United States. PROCEDURE: Semi-structured interviews were conducted with a purposive sample of psychosocial care providers (N = 27) working across the United States in pediatric oncology centers of varied sizes. Interviews queried providers regarding sibling-focused parent psychoeducation, psychosocial screening, comprehensive assessment, and psychosocial support offerings. Interview data were analyzed using Applied Thematic Analysis. RESULTS: Across cancer centers, sibling care practices did not align with consensus-based recommendations. The nature and availability of sibling-focused psychoeducation, screening, assessment, and support were variable between and within centers. Siblings themselves were largely absent from sibling psychosocial care, and care was rarely sibling-specific. The flow of information about siblings was discontinuous and uncoordinated across the care continuum, resulting in psychosocial care provided reactively, typically in response to parental concerns. CONCLUSIONS: Sibling psychosocial care provision falls short of established care recommendations, leaving sibling psychosocial needs unmet. Findings highlight the need for tools and strategies to facilitate the implementation of sibling psychosocial care across the care continuum, to support siblings' psychosocial functioning across the life course.


Asunto(s)
Neoplasias , Rehabilitación Psiquiátrica , Humanos , Niño , Hermanos/psicología , Neoplasias/terapia , Neoplasias/psicología , Oncología Médica , Padres/psicología
11.
Psychooncology ; 31(10): 1774-1781, 2022 10.
Artículo en Inglés | MEDLINE | ID: mdl-36029137

RESUMEN

OBJECTIVE: Psychosocial screening can facilitate the identification of families who have difficulty adjusting to and managing serious pediatric illness. Despite siblings' roles within the family and increased psychosocial risk, a systematic approach to screening siblings of youth with cancer remains rare. One barrier to systematic sibling screening is the lack of a validated screener. We aimed to establish initial validity of the new parent-reported Psychosocial Assessment Tool (PAT) Sibling Modules for siblings ages 0-2, 3-4, 5-9, and 10+. METHODS: Families (N = 64) completed the PAT Sibling Modules and the Strengths and Difficulties Questionnaire (SDQ) regarding siblings' functioning at cancer diagnosis (13-23 items, depending on age version) and 6 months later (17-42 items). Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity of the PAT Sibling Modules. RESULTS: Baseline and follow-up versions of the modules have strong internal consistency (Kuder-Richardson 20 range: 0.82-0.93) and convergent validity at diagnosis (r-values ≥0.4, p-values <0.01) and follow-up (r-values >0.4, p-values <0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores (r = 0.86, p < 0.001). CONCLUSIONS: Findings provide initial evidence that the PAT Sibling Modules are valid measures of sibling psychosocial risk. Availability of a validated screener is a first step toward addressing siblings' unmet psychosocial needs.


Asunto(s)
Neoplasias , Hermanos , Adolescente , Niño , Estudios Transversales , Humanos , Lactante , Recién Nacido , Tamizaje Masivo , Neoplasias/diagnóstico , Neoplasias/psicología , Psicometría , Hermanos/psicología
12.
Pediatr Blood Cancer ; 69(2): e29418, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-34786821

RESUMEN

BACKGROUND: Siblings of children with cancer are at increased risk for poor long-term psychosocial outcomes. The standard of psychosocial care in pediatric oncology calling for sibling support is not routinely implemented, often leaving siblings with unmet psychosocial needs. Barriers to implementing the sibling standard may exist at multiple levels. This study addresses research gaps regarding multilevel barriers to supporting siblings at the health care system, oncology center, and family levels. PROCEDURE: Qualitative interviews were conducted with psychosocial care providers (N = 27; 18 psychologists, five social workers, three psychiatrists, and one child life specialist) employed at oncology centers within hospitals across the United States, varying in extent of sibling programming and center size. Interviews included questions about providers' roles, oncology center characteristics, existing psychosocial sibling services, barriers to providing systematic sibling assessment, and ideas about how to overcome barriers. Data were analyzed using applied thematic analysis. RESULTS: Qualitative analysis revealed (a) barriers to providing sibling services occur at multiple levels (health care system, oncology center, family); (b) barriers at multiple levels frequently interact with one another; and (c) interacting barriers maintain a cycle: barriers to providing services contribute to limited provision of services, low service provision leads to limited utilization of existing services and underprioritization of siblings, and together this leads to siblings being off the radar, which further limits sibling service provision. CONCLUSION: Addressing health care system and oncology center barriers to implementing sibling assessment and support may be important potential targets for interventions to help ensure that siblings receive needed psychosocial assessment and support.


Asunto(s)
Neoplasias , Rehabilitación Psiquiátrica , Niño , Humanos , Oncología Médica , Evaluación de Necesidades , Neoplasias/psicología , Neoplasias/terapia , Hermanos/psicología
13.
Acad Pediatr ; 22(2): 279-288, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-34963655

RESUMEN

OBJECTIVE: The American Academy of Pediatrics (AAP) recommends that pediatricians screen all young children for autism spectrum disorder (ASD). However, the US Preventive Services Task Force stated that there is insufficient evidence about the potential harms and benefits of universal ASD screening. To address this gap, we conducted qualitative interviews with caregivers of children who received a false-positive ASD screen to learn about families' perceptions of the harms and benefits of universal ASD screening. METHODS: Culturally diverse caregivers (N = 26) of children with false-positive ASD screens completed qualitative interviews focused on parents' experiences with and recommendations to improve the ASD screening and evaluation process. Interviews were transcribed verbatim, coded, and analyzed using applied thematic analysis. RESULTS: Parents explained that the ASD screening and evaluation process increased their knowledge about child development and substantiated existing concerns. The ASD screening and evaluation process resulted in connecting their child to services, which parents felt led to improvements in their child's delays. Parents endorsed anxiety during wait times for the formal developmental assessment. However, all parents expressed that, if given the option, they would repeat the screening and evaluation process again. Caregivers recommended universal screening for ASD and suggested that screening extend beyond the pediatrician to other settings. CONCLUSIONS: From parents' perspectives, the connection to developmental services and increased knowledge of child development that resulted from the false-positive ASD screen outweighed the time-limited emotional distress triggered by a positive ASD screen. Overall, parents' preferences for universal ASD screening align with the AAP's recommendations.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Trastorno del Espectro Autista/diagnóstico , Niño , Preescolar , Familia , Humanos , Tamizaje Masivo , Padres
14.
J Autism Dev Disord ; 52(9): 4100-4113, 2022 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-34559336

RESUMEN

Siblings describe positive and negative aspects of autism and often assume lifelong support roles. Less is known about cultural influences on sibling relationships. This qualitative study characterizes processes linking siblings' autism conceptualizations, sibling relationships, and self-concept using a multicultural framework. Siblings (12 Latino/a/x, 9 non-Latino/a/x white) participated. Data were stratified by ethnicity and analyzed using applied thematic analysis. Latino/a/x and non-Latino/a/x siblings described processes linking autism, relationships, and self-concept differently. Latino/a/x siblings emphasized family roles and identified as caregivers and protectors. Non-Latino/a/x siblings emphasized general sensitivity toward individuals who differed from themselves. Findings may reflect cultural differences in familism, caregiving expectations, and autism conceptualizations, thereby illuminating foundations of siblings' lifelong caregiving roles and highlighting the importance of culturally-sensitive, family-centered care.


Asunto(s)
Trastorno del Espectro Autista , Trastorno Autístico , Relaciones entre Hermanos , Cuidadores , Hispánicos o Latinos , Humanos , Autoimagen , Hermanos
15.
J Dev Behav Pediatr ; 42(4): 331-339, 2021 05 01.
Artículo en Inglés | MEDLINE | ID: mdl-33395147

RESUMEN

OBJECTIVE: Serious childhood illnesses such as cancer affect all family members. Siblings experience strong emotions and disruptions to their routines as families reorganize to confront the disease and manage treatment. Addressing siblings' psychosocial needs is a standard of care in pediatric oncology, but siblings' needs are rarely met because of systematic barriers in our health care system. Thus, we aimed to re-envision sibling care. We used an appreciative inquiry approach to inform systematic screening of siblings' psychosocial risk and unmet needs as a first step toward providing appropriate support. METHOD: Sibling-focused researchers, clinicians, policymakers, advocates, and families of youth with cancer (N = 29) convened for a 2-day community stakeholder-centered international summit to create a vision for standardizing and optimizing sibling-focused psychosocial screening and assessment as a pathway to care, including crafting a research agenda and articulating best clinical practices. RESULTS: Summit attendees created a detailed framework for best practices in universal sibling psychosocial screening and pathways to support. The framework emphasizes links between hospital- and community-based care. It highlights the need to prepare systems to feasibly and effectively attend to siblings' needs and recommends incorporating siblings into family-based psychosocial screening at cancer diagnosis, systematically conducting sibling-focused psychosocial screening during and after cancer treatment, and connecting siblings with community-based resources. CONCLUSION: A systematic approach to sibling psychosocial services expands the idea of family-centered care to include siblings and ensures that siblings' needs are adequately recognized and met. This framework was created in the context of cancer but is applicable across illness groups.


Asunto(s)
Neoplasias , Hermanos , Adolescente , Niño , Enfermedad Crónica , Familia , Humanos , Neoplasias/terapia , Sistemas de Apoyo Psicosocial
16.
Behav Sleep Med ; 19(6): 744-753, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33336599

RESUMEN

Introduction: Clinical psychologists often treat patients with a sleep disorder. Cognitive-behavioral treatments can independently, or in combination with medical interventions, effectively improve sleep health outcomes. No studies have examined sleep education and training among practicing clinical psychologists.Method: Actively practicing clinical psychologists were recruited through psychological associations' e-mail listservs across the United States and Canada. Respondents (N = 200) provided information about: 1) duration and format of formal sleep education and training; 2) perceived self-efficacy to evaluate and treat sleep disorders; and 3) interest in further sleep training.Results: Clinical psychologists reported a median of 10.0 hours of didactic sleep training (range 0-130 hours) across their training or career. Ninety-five percent reported no clinical sleep training during graduate school, internship, or post-doctoral fellowship. In terms of evaluation and treatment, 63.2% reported feeling at least "Moderately Prepared" to evaluate a patient's sleep and 59.5% felt at least "Moderately Prepared" to treat a common sleep disorder (insomnia disorder). However, most endorsed using insomnia disorder treatment approaches inconsistent with empirically supported guidelines. The vast majority (99.3%) desired additional sleep training across a variety of delivery formats.Discussion: Many clinical psychologists engaged in active patient care have received minimal formal sleep training. Despite this, they felt prepared to evaluate and treat sleep disorders. Their treatment recommendations were not aligned with evidence-based standards. This may result in a delay to, or absence of, effective treatment for patients, underscoring the critical need for sleep training among clinical psychologists. It is essential to improve sleep competencies for the field.


Asunto(s)
Trastornos del Inicio y del Mantenimiento del Sueño , Trastornos del Sueño-Vigilia , Canadá , Becas , Humanos , Sueño , Trastornos del Sueño-Vigilia/terapia , Estados Unidos
17.
Autism Adulthood ; 2(3): 177-184, 2020 Sep 01.
Artículo en Inglés | MEDLINE | ID: mdl-32959029

RESUMEN

The relatively nascent empirical knowledge base regarding autism in adulthood provides an opportunity to adopt a contextual approach that conceptualizes autism features, outcomes, and supportive services as interactions between the characteristics of the condition and contextual factors across the life course. Although a contextual approach encompasses many aspects of a person's identity and social ecology, we focus here on the closely interrelated family and cultural contexts, which have been poorly integrated into adult autism research. We argue that designing studies with a priori attention to context (e.g., family and culture) will improve the relevance and comprehensiveness of findings, which in turn will improve construct validity and provide a more accurate understanding of autism-related outcomes in adulthood. Similarly, designing and/or selecting measures that have been validated with culturally and linguistically diverse samples will improve the utility of findings and reduce spurious or null effects. More contextually informed methodologies will lead to improved generalizability and practical applications of findings. We offer concrete guidance regarding how to increase the social ecological perspective within adult autism research as it relates to study conceptualization, methodology, and measurement.

18.
J Pediatr Psychol ; 45(5): 550-560, 2020 06 01.
Artículo en Inglés | MEDLINE | ID: mdl-32279072

RESUMEN

BACKGROUND: Poor sleep is common for children during cancer treatment, but there is limited understanding of the nature of children's sleep throughout the treatment trajectory. The current exploratory study used an explanatory sequential mixed method approach to examine quantitative associations among sleep problems in children with cancer, parental behavior, and children's sleep hygiene, with follow-up qualitative characterizations of children's sleep across cancer treatment stages. PROCEDURE: Eighty parents of children with cancer (aged 2-10 years; in active treatment, maintenance treatment, or off treatment) completed an online survey querying the child's sleep quality (Sleep Disturbance Scale for Children-Disorders of Initiating and Maintaining Sleep subscale) and behaviors (Child Sleep Hygiene Scale) and sleep-related parenting behaviors (Parental Sleep Strategies). A subsample (n = 17 parents) participated in qualitative interviews to better characterize the processes of children's sleep and parents' sleep-related behaviors. RESULTS: Children's sleep quality, sleep hygiene, or parental sleep strategies were not significantly different by cancer treatment groups. Greater sleep disturbance in children was associated with their parents' tendency to accommodate the child's bedtime requests. Qualitatively, cancer treatment-related anxiety in both children and parents influence the onset of these disruptive sleep behaviors. CONCLUSION: Parents' sleep-related behaviors affect children's sleep during cancer treatment. Parents' accommodation may start during active treatment to alleviate cancer-related challenges, and these behaviors may continue into maintenance therapy and off treatment to reinforce sleep disturbance. Behavioral interventions targeting unhelpful parental behaviors may improve sleep in children with cancer during and after cancer treatment.


Asunto(s)
Neoplasias , Relaciones Padres-Hijo , Trastornos del Sueño-Vigilia , Sueño , Adulto , Niño , Preescolar , Emociones , Humanos , Neoplasias/complicaciones , Neoplasias/terapia , Responsabilidad Parental , Padres , Trastornos del Sueño-Vigilia/etiología
19.
J Fam Psychol ; 34(6): 698-708, 2020 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-31829671

RESUMEN

Childhood cancer is a significant psychosocial stressor, and sibling adjustment ranges from resilience to clinically significant psychopathology. Siblings and parents often describe siblings' psychosocial functioning differently, which may reflect parental unawareness of siblings' adjustment to cancer and increase the risk for negative sibling outcomes. The present study characterizes siblings' and parents' perceptions of parents' awareness of siblings' psychosocial functioning and describes how family functioning influences parental awareness. Parents (N = 13) and siblings (N = 17, ages 8-17) from 13 families completed in-depth qualitative interviews regarding siblings' psychosocial adjustment to cancer. Interviews were coded for dimensions of family functioning based on the McMaster Model and analyzed using applied thematic analysis. Families were stratified based on higher or lower levels of parental awareness (i.e., knowledge of the presence, severity, or content of siblings' cancer-related feelings). Themes related to communication, affective involvement, roles, problem-solving, and affective responsiveness influenced parental awareness. Parental awareness was hindered by siblings' reluctance to communicate their feelings to parents due to the messages they received about cancer (e.g., be positive/helpful), siblings' hesitancy to rely on parents for emotional support, and parents not consistently asking about siblings' emotions. Additionally, parents' cancer-related stress and family disruptions reduced parental focus on siblings and decreased parents' tolerance of siblings' negative emotions. Higher parental awareness was facilitated by closer relationships prediagnosis, consistent communication, and affective problem-solving in response to cancer-related changes. Findings provide a more comprehensive understanding of the family processes underlying parental awareness and inform best practices for sibling assessment and support. (PsycInfo Database Record (c) 2020 APA, all rights reserved).


Asunto(s)
Adaptación Psicológica , Relaciones Familiares/psicología , Neoplasias/psicología , Padres/psicología , Hermanos/psicología , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Investigación Cualitativa
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