Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems
Behavior Problems; child behavior problems; Chronic Illness; complex chronic conditions; families; Family; Palliative Care; pediatric palliative care; Pediatrics; posttraumatic growth; Posttraumatic Growth; siblings; Siblings
Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Journal of Pediatric Psychology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsw053</a>
Competencies for Psychology Practice in Pediatric Palliative Care
competencies; critical illness; end-of-life care; interdisciplinary; Palliative Care; pediatric palliative care; Self Psychology
OBJECTIVE: Pediatric psychologists have unique expertise to contribute to the care of youth with serious illnesses yet are not routinely integrated into pediatric palliative care (PPC) teams. To better define the role and unique skillset of psychologists practicing in PPC, support their systematic inclusion as part of PPC teams, and advance trainee knowledge of PPC principles and skills, the PPC Psychology Working Group sought to develop core competencies for psychologists in this subspecialty. METHODS: A Working Group of pediatric psychologists with expertise in PPC met monthly to review literature and existing competencies in pediatrics, pediatric and subspecialty psychology, adult palliative care, and PPC subspecialties. Using the modified competency cube framework, the Working Group drafted core competencies for PPC psychologists. Interdisciplinary review was conducted by a diverse group of PPC professionals and parent advocates, and competencies were revised accordingly. RESULTS: The six competency clusters include Science, Application, Education, Interpersonal, Professionalism, and Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and behavioral anchors (i.e., examples of concrete application). Reviewer feedback highlighted clarity and thoroughness of competencies and suggested additional consideration of siblings and caregivers, spirituality, and psychologists' own positionality. CONCLUSIONS: Newly developed competencies for PPC psychologists highlight unique contributions to PPC patient care and research and provide a framework for highlighting psychology's value in this emerging subspecialty. Competencies help to advocate for inclusion of psychologists as routine members of PPC teams, standardize best practices among the PPC workforce, and provide optimal care for youth with serious illness and their families.
Thompson AL; Schaefer MR; McCarthy SR; Hildenbrand AK; Cousino MK; Marsac ML; Majeski J; Wohlheiter K; Kentor RA
Journal of Pediatric Psychology
2023
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<a href="http://doi.org/10.1093/jpepsy/jsad007" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsad007</a>
Parent and Well-Sibling Communication in Families With a Child Who Has a Life-Limiting Condition: Quantitative Survey Data
child; communication; life-limiting condition; parent; sibling
OBJECTIVE: Living with a child with a life-limiting condition (LLC), for which there is no hope of cure and premature death is expected, places much stress on a family unit. Familial communication has the potential to serve as a buffer when children are faced with stressful situations. The overall aim of the study was to learn more about illness-related communication between parents and well-siblings, giving particular consideration to the amount of illness-related communication, and sibling satisfaction with familial communication. METHODS: Participants included 48 well-siblings (aged 6-21 years) of children with LLCs and their parents. Parents and well-siblings independently completed validated measures of familial communication and sibling functioning. Parents also provided demographic information and completed a questionnaire assessing amount of illness-related information provided to well-siblings. RESULTS: Parents reported that 47.8% of well-siblings never or rarely initiated conversations about their sibling's illness. Moreover, 52.2% of well-siblings never or rarely spoke about death. Amount of illness-related communication between parents and well-siblings was most strongly predicted by parental resilience and well-sibling age. Parents engaged in significantly more illness-related communication with girls than boys (t(44)=-2.28, p = .028). Well-siblings (p < .01) and parents (p < .05) rated satisfaction with familial communication significantly higher than published norms. The only significant predictor of well-sibling satisfaction with familial communication was greater familial cohesion. Family communication variables were not significantly correlated with measures of sibling functioning (all p's>.05). CONCLUSIONS: This study provides new information regarding parent and well-sibling communication in families who have a child with a LLC.
Jaaniste T; Chin WLA; Tan SC; Cuganesan A; Coombs S; Heaton M; Cowan S; Potter D; Aouad P; Smith PL; Trethewie S
Journal of Pediatric Psychology
2021
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<a href="http://doi.org/10.1093/jpepsy/jsab128" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsab128</a>
Caregiver-Child Discrepancies in Reports of Child Emotional Symptoms in Pediatric Chronic Pain
children; Child; Female; Humans; Male; Emotions; Quality of Life; depression; Caregivers; Pain Measurement; Chronic Pain; Depression; anxiety; Anxiety/epidemiology; parents; chronic and recurrent pain; informant discrepancies
OBJECTIVE: Pediatric chronic pain evaluation includes self-reports and/or caregiver proxy-reports across biopsychosocial domains. Limited data exist on the effects of caregiver-child discrepancies in pediatric pain assessment. In children with chronic pain, we examined associations among discrepancies in caregiver-child reports of child anxiety and depressive symptoms and child functional impairment. METHODS: Participants were 202 children (Mage=14.49 ± 2.38 years; 68.8% female) with chronic pain and their caregivers (95.5% female). Children and caregivers completed the Revised Child Anxiety and Depression Scale (RCADS) and RCADS-Parent, respectively. Children also completed the Functional Disability Inventory. Mean difference tests examined caregiver-child discrepancies. Moderation analyses examined whether associations between child self-reported anxiety and depressive symptoms and functional impairment varied as a function of caregiver proxy-report. RESULTS: Children reported more anxiety and depressive symptoms compared with their caregivers' proxy-reports (Z = -4.83, p < .001). Both informants' reports of child anxiety and depressive symptoms were associated with child functional impairment (rs = .44, rs = .30, p < .001). Caregiver proxy-report moderated associations between child-reported anxiety and depressive symptoms and functional impairment (B = -0.007, p = .003). When caregiver proxy-report was low, child self-reported anxiety and depressive symptoms were positively related to functional impairment (B = 0.28, SE = 0.07, 95% CI [0.15, 0.41], p < .001). CONCLUSIONS: Discrepant caregiver-child perceptions of child anxiety and depressive symptoms may be associated with functioning in children with chronic pain, especially when caregivers report less child internalizing symptoms. These findings highlight the need for further examination of the effects of caregiver-child discrepancies on pediatric chronic pain outcomes and may indicate targets for intervention.
Martin SR; Zeltzer LK; Seidman LC; Allyn KE; Payne LA
Journal of Pediatric Psychology
2020
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<a href="http://doi.org/10.1093/jpepsy/jsz098" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsz098</a>
Development of a Psychosocial Risk Screener for Siblings of Children With Cancer: Incorporating the Perspectives of Parents
ObjectiveAlthough many siblings experience distress after a child�s cancer diagnosis, their psychosocial functioning is seldom assessed in clinical oncology settings. One barrier to systematic sibling screening is the lack of a validated, sibling-specific screening instrument. Thus, this study developed sibling-specific screening modules in English and Spanish for the Psychosocial Assessment Tool (PAT), a well-validated screener of family psychosocial risk.MethodsA purposive sample of English- and Spanish-speaking parents of children with cancer (N?=?29) completed cognitive interviews to provide in-depth feedback on the development of the new PAT sibling modules. Interviews were transcribed verbatim, cleaned, and analyzed using applied thematic analysis. Items were updated iteratively according to participants� feedback. Data collection continued until saturation was reached (i.e., all items were clear and valid).ResultsTwo sibling modules were developed to assess siblings� psychosocial risk at diagnosis (preexisting risk factors) and several months thereafter (reactions to cancer). Most prior PAT items were retained; however, parents recommended changes to improve screening format (separately assessing each sibling within the family and expanding response options to include �sometimes�), developmental sensitivity (developing or revising items for ages 0�2, 3�4, 5�9, and 10+?years), and content (adding items related to sibling-specific social support, global assessments of sibling risk, emotional/behavioral reactions to cancer, and social ecological factors such as family and school).ConclusionsPsychosocial screening requires sibling-specific screening items that correspond to preexisting risk (at diagnosis) and reactions to cancer (several months after diagnosis). Validated, sibling-specific screeners will facilitate identification of siblings with elevated psychosocial risk.
Long Kristin A; Pariseau EM; Muriel AC; Chu A; Kazak AE; Alderfer MA
Journal of Pediatric Psychology
2018
<a href="http://doi.org/%2010.1093/jpepsy/jsy021" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsy021</a>
Screening for Family Psychosocial Risk in Pediatric Cancer: Validation of the Psychosocial Assessment Tool (PAT) Version 3
ObjectiveFamily psychosocial risk screening is an important initial step in delivering evidence-based care. The Psychosocial Assessment Tool (PAT) is a brief parent report screener based on the trilevel Pediatric Psychosocial Preventative Health Model (PPPHM; Universal, Targeted, Clinical). The current article validates a revised PAT (version 3.0) in pediatric oncology that includes new items (for families of younger patients; clinically relevant risk items) and applicable to broad health literacy levels (a 4th grade reading level).MethodsPrimary caregivers of 394 children newly diagnosed with cancer participated in this multisite investigation, completing the PAT and validation measures using REDCap.ResultsThe original structure of the PAT, with seven subscales (Family Structure, Social Support, Child Problems, Sibling Problems, Family Problems, Stress Reactions, and Family Beliefs) was supported using a confirmatory factor analysis. Internal consistency for the total score (Kuder�Richardson 20 coefficient [KR20]?=?0.81) and the subscales (KR20?=?0.59�0.85) was moderate to strong. Moderate to strong correlations with the criteria measures provided validation for the total and subscale scores. The validation measures varied significantly, as expected, across the three levels of the PPPHM. Receiver operating characteristic (ROC) analyses showed that the PAT total and subscale scores can discriminate families above and below clinical thresholds.ConclusionsResults reinforce the psychometric properties of this approach for screening of family psychosocial risk. The PAT provides an evidence-based screener that identifies families at three levels of risk and can provide the basis for further evaluation and treatment of children with cancer and their families.
Kazak AE; Hwang W-T; Chen FF; Askins Martha A; Carlson O; Argueta-Ortiz F; Barakat Lamia P
Journal of Pediatric Psychology
2018
<a href="http://doi.org/%2010.1093/jpepsy/jsy012" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsy012</a>
Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems
OBJECTIVE: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. RESULTS: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. CONCLUSION: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.
2016-06
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Journal of Pediatric Psychology
2016
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer">10.1093/jpepsy/jsw053</a>
Promoting Resilience in Stress Management: A Pilot Study of a Novel Resilience-Promoting Intervention for Adolescents and Young Adults With Serious Illness
cancer; coping; psychosocial outcomes; health outcomes; adolescent young adult; AYA; Diabetes; Intervention; Resilience
Objective To examine the feasibility and format of the Promoting Resilience in Stress Management (PRISM) intervention among two groups of adolescents and young adults (AYAs) at-risk for poor outcomes: those with Type 1 diabetes (T1D) or cancer. Methods PRISM consists of two long or four short skills-based modules. English-speaking patients 12–25 years old were eligible if they had T1D for >6 months or cancer for >2 weeks. Feasibility was defined as an 80% completion rate and high satisfaction. Ongoing monitoring shaped iterative refinement of disease-specific approach. Results 12 of 15 patients with T1D (80%) completed the two-session intervention. 3 of 15 patients with cancer declined to complete the two-session version, citing prohibitive length of individual sessions. 12 (80%) completed the four-session version. Patient-reported satisfaction was high across groups. Conclusions The PRISM intervention is feasible and well-accepted by AYAs with cancer or T1D. Differences in patient populations warrant differences in approach.
2015-02
Rosenberg AR; Yi-Frazier JP; Eaton L; Wharton C; Cochrane K; Pihoker C; Baker KS; McCauley E
Journal of Pediatric Psychology
2015
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsv004" target="_blank" rel="noreferrer">10.1093/jpepsy/jsv004</a>
Brief report: psychosocial functioning of fathers as primary caregivers of pediatric oncology patients
Child; Humans; Male; Adult; Questionnaires; Social Adjustment; Psychology; Stress; Social Behavior; Psychological/diagnosis/epidemiology/psychology; Caregivers/statistics & numerical data; Disabled Children/statistics & numerical data; father experience; Fathers/psychology/statistics & numerical data; Neoplasms/epidemiology
OBJECTIVE: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. METHODS: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the Brief Symptom Inventory (BSI), the Impact of Event Scale (IES), the Impact on Family Scale (IFS), the Caregiver Strain Questionnaire (CGSQ), and the Parent Experience of Child Illness (PECI) scale, to complete and return by mail. The 23 fathers who returned the questionnaire packets were compared with 23 mothers who were matched on demographic variables. RESULTS: There were no differences between groups on self-report measures of distress or illness-related parenting stress. Descriptively, however, the majority of parents were above normative means on measures of psychological distress with a significantly greater proportion of fathers endorsing elevated levels of depression on the BSI. CONCLUSION: Including fathers in pediatric psychosocial research is important and represents a growing trend in psycho-oncology.
2007
Bonner MJ; Hardy KK; Willard VW; Hutchinson KC
Journal of Pediatric Psychology
2007
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsm011" target="_blank" rel="noreferrer">10.1093/jpepsy/jsm011</a>
Evidence-based assessment of coping and stress in pediatric psychology
Longitudinal Studies
OBJECTIVE: To review selected measures of stress and coping in pediatric populations. Stress and coping are presented within a risk and resiliency framework. METHODS: The Society of Pediatric Psychology (SPP) surveyed the membership to identify the most frequently used assessment instruments. Twelve measures of coping and three measures of stress were reviewed. These instruments were evaluated using the Stress and Coping workgroup's modification of the criteria developed by the SPP Assessment Task Force (SPP-ATF). RESULTS: One of the three measures of stress and five of the 12 measures of coping were Well-established measures that broaden understanding. Additionally, one of the coping measures was categorized as a Well-established measure that guides treatment. Merits of the individual measures are discussed. CONCLUSIONS: Recommendations for future research are provided, including suggestions for the construction and use of measures to inform treatment research.
2008
Blount RL; Simons LE; Devine KA; Jaaniste T; Cohen LL; Chambers CT; Hayutin LG
Journal of Pediatric Psychology
2008
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsm071" target="_blank" rel="noreferrer">10.1093/jpepsy/jsm071</a>
Single parents of children with chronic illness: an understudied phenomenon
OBJECTIVE: To examine the chronic illness literature and evaluate the impact on single parenting and children and adolescents with chronic illness. METHODS: We conducted literature reviews of relevant research pertaining to single-parent families on PubMed, Medline, and PsychINFO and also surveyed pertinent book chapters and all of the articles from the Journal of Pediatric Psychology since 1987 for articles, specifically examining the potential associations of single (lone) parenting versus two-parent households on children's psychosocial functioning and the impact of the child's illness on caregiver functioning. RESULTS: While the literature has examined and discussed the stressors associated with parenting a child with an illness, including the impact of illness on finances, family roles, and caregiver burden, few studies have examined single parents of children and adolescents with chronic illnesses and related stressors stemming from being a lone caregiver. CONCLUSIONS: There is a dearth of studies examining the association between lone parenting and psychosocial functioning among children and adolescents with chronic illnesses. Specific questions necessitating future investigation are summarized and recommendations are made for future research in this important area of inquiry.
2008
Brown RT; Wiener L; Kupst MJ; Brennan T; Behrman R; Compas BE; David ET; Fairclough D; Friebert S; Katz E; Kazak AE; Madan-Swain A; Mansfield N; Mullins L; Noll R; Patenaude AF; Phipps S; Sahler OJ; Sourkes B; Zeltzer L
Journal of Pediatric Psychology
2008
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsm079" target="_blank" rel="noreferrer">10.1093/jpepsy/jsm079</a>
Psychosocial functioning in youth with glycogen storage disease type I
Child; Female; Humans; Male; Adult; Florida; Family Health; Case-Control Studies; quality of life; adolescent; Preschool; Adaptation; Psychological; Adolescent Transitions; Parents/psychology; Diabetes Mellitus/psychology; Glycogen Storage Disease Type I/psychology; Loneliness
OBJECTIVE: To assess the quality of life and psychosocial functioning among pediatric patients with Glycogen Storage Disease (GSD) types Ia and Ib. METHODS: Thirty-one youth with GSD types Ia and Ib and 42 healthy controls participated. Quality of life ratings from the GSD types Ia and Ib sample were compared with a previously reported clinical comparison sample. Children completed measures of quality of life, loneliness, family functioning, and sibling relationship quality (e.g., warmth, conflict). Parents completed measures of parental distress, parenting stress, child adaptive behavior, and child emotional and behavioral functioning. RESULTS: Quality of life was generally lower in youth with GSD relative to healthy controls but similar to those with a chronic illness. Children with GSD were rated as having more internalizing symptoms, social problems, and lower independent functioning relative to healthy controls. Parents reported greater distress and parenting stress relative to healthy controls. CONCLUSIONS: The presence of GSD types Ia and Ib are associated with reduced quality of life and independent functioning, and elevated levels of internalizing distress and parental stress relative to healthy peers. Relative to their children, parents generally reported that their child was more impaired, which suggests the need for multiple informants during assessment and active parental involvement during psychological treatment. These points should be kept in mind when assessing and treating youth with this disease and their families as psychological interventions that target areas of concern (e.g., adherence, coping with having a chronic disease) may be helpful for improving child and family outcomes.
2008
Storch E; Keeley M; Merlo L; Jacob M; Correia C; Weinstein D
Journal of Pediatric Psychology
2008
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsn017" target="_blank" rel="noreferrer">10.1093/jpepsy/jsn017</a>
Family functioning in school-age children with cystic fibrosis: an observational assessment of family interactions in the mealtime environment
Communication; U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; affect management; age-matched peers. Families were rated on overall family functioning and on six dimensions of the MICS: task accomplishment; and behavioral control. Moreover; and role allocation. RESULTS: Ratings for families of a child with CF were significantly lower than they were for comparison families on overall family functioning and on four of the six MICS dimensions: communication; as well as child-centered; behavior control; Child Cystic Fibrosis/psychology Family/psychologyFeeding Behavior Female HumansInterpersonal Relations Male Observation Research Support; interpersonal involvement; interventions to help families manage challenges presented during the family meal.; P.H.S.Social Environment Time Factors%X OBJECTIVE: To examine; the family system is negatively affected during mealtime. Dietary interventions need to address family-centered; using direct observation methodology
2005
Janicke DM; Mitchell MJ; Stark LJ
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi005" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi005</a>
Psychosocial functioning in pediatric cancer
PedPal Lit; Adaptation; and multi-institutional cooperation will aid future pediatric psycho-oncology investigators.; and special risk populations. Methodological challenges; appropriate methodology; coping and adjustment; improving methodology; late effects; procedural pain; psyc hosocial researchers will be better able to conduct longitudinal studies not only of adjustment and its predictors but also of the impact of the emerging medical treatments and interventions to ameliorate late effects of treatment. Additional funding; Psychological Child Communication Cost of Illness Family/psychology Humans Neoplasms/; psychological distress; Social Behavior%X OBJECTIVE: To describe the emergence of pediatric psycho-oncology and to summarize research on psychosocial aspects of childhood cancer and survivorship. METHODS: To review research into illness communication and informed consent; subsets of more vulnerable patients and family members exist. Factors predicting positive and negative coping have been identified. CONCLUSIONS: As the numbers of pediatric cancer survivors increase; therapy Pain/psychology Psychology Sick Role Social Adjustment
2005
Patenaude AF; Kupst MJ
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi012" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi012</a>
Psychological research in childhood cancer: the Children's Oncology Group perspective
U.S. Gov't; PedPal Lit; Non-U.S. Gov't Research Support; access to adequate numbers of participants; and access to longitudinal cohorts. Barriers include cost; and ultimately prevent these effects by better diagnostic classification and targeted treatment. This focus should ultimately lead to translation of intervention research findings to standard of care in the larger childhood cancer community.; Child Humans Medical Oncology/methods Neoplasms/therapyPatient Care Team Psychology/methodsResearch Research Support; competition for limited resources; lessen the impact of late effects of treatment; multicenter clinical-trial cooperative groups offer opportunities for psychological research that may be impossible at local institutions. Benefits include collaboration with other disciplines; P.H.S.%X OBJECTIVE: To review benefits and barriers to psychological research on childhood cancer in multidisciplinary; shared research infrastructure; standardization and quality control
2005
Armstrong FD; Reaman GH
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi020" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi020</a>
Commentary: traversing hurdles: the future of collaborative pediatric oncology research
PedPal Lit; Biomedical Research/methods/trends ChildCooperative Behavior Forecasting Humans Medical Oncology/methods/trends Neoplasms/therapy Pediatrics/methods/trends
2005
Briery BG
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi023" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi023</a>
Clinician-parent communication during informed consent for pediatric leukemia trials
U.S. Gov't; PedPal Lit; Extramural Research Support; N.I.H.; Adolescent Adult Anxiety/prevention & control/psychology Child Child; P.H.S.%X OBJECTIVE: To address the need to describe informed consent in pediatric settings and to identify barriers to parent understanding; parent anxiety and control as a result of the ICC; Preschool Clinical TrialsCommunication Decision Making Female Humans InfantInformed Consent Leukemia/therapy Male Parents/psychologyProfessional-Family Relations Research Support
2005
Miller VA; Drotar D; Burant C; Kodish E
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi032" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi032</a>
Commentary: SES, ethnicity and goodness-of-fit in clinician-parent communication during pediatric cancer trials
PedPal Lit; Adult ChildClinical TrialsCommunicationEthnic Groups Humans Informed ConsentNeoplasmsProfessional-Family Relations
2005
Fisher CB
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi033" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi033</a>
Very preterm birth is associated with disabilities in multiple developmental domains
PedPal Lit; Newborn Infant; 17% had a single disability; a single; Achievement Child; and 44% had multiple disabilities. Multiple disabilities were associated with lower birth weight; and behavioral domain was studied in 157 children born < 30 weeks gestation. The children were divided into a normal; and difficulties according to neurodevelopmental assessments at 2 years. CONCLUSION: Assessments of different developmental domains show that most very preterm children had multiple disabilities.; and neurodevelopmental outcome at 2 years were evaluated. RESULTS: Thirty-nine percent had a normal developmental outcome; BPD; clinical characteristics; cognitive; motor; or a multiple disability group. Group differences in background; outcome in the neurological; Premature Intelligence Tests Male Psychomotor Disorders/diagnosis/epidemiology/etiology Research Support; Preschool Cognition Disorders/diagnosis/epidemiology/etiology Developmental Disabilities/diagnosis/epidemiology/etiologyDisabled Children Female Gestational Age Humans Infant Infant
2005
van Baar AL; van Wassenaer AG; Briet JM; Dekker FW; Kok JH
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi035" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi035</a>
When Distraction Fails: Parental Anxiety and Children's Responses to Distraction during Cancer Procedures
PedPal Lit
2005
Dahlquist LM; Pendley JS
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi048" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi048</a>
Are fathers involved in pediatric psychology research and treatment?
PedPal Lit
2005
Phares V; Lopez E; Fields S; Kamboukos D; Duhig AM
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi050" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi050</a>
Brief report: family-based group intervention for young siblings of children with chronic illness and developmental disability
adolescent; Child; Female; Humans; infant; Male; Adult; Chronic disease; Follow-Up Studies; Siblings; Social Adjustment; Developmental Disabilities; Family Therapy; Analysis of Variance; Practice; Preschool; Adaptation; Psychological; Attitudes; PedPal Lit; Health Knowledge; Intervention; Interventions; sibling bereavement
OBJECTIVE: To evaluate the impact of a family-based group intervention for young siblings of children with chronic illness and developmental disability (CI/DD). METHODS: Forty-three healthy siblings (ages 4-7 years) of children with CI/DD and their parents participated in an intervention designed to address sibling challenges that cut across types of diagnostic conditions. The intervention consisted of six sessions of collateral and integrated sibling-parent groups. Measures of sibling knowledge, sibling sense of connectedness with other children in similar family circumstances, and sibling global functioning were collected before and after intervention. A subsample of 17 families completed a 3-month follow-up. RESULTS: Siblings' knowledge of the child's disorder and sibling connectedness increased significantly from pre- to posttreatment for both boys and girls, regardless of the nature of the brother or sister's condition. Sibling perceptions of self-competence increased from pre- to posttreatment, whereas parent reports of sibling behavioral functioning remained within the normal range. Improvements in sibling knowledge and connectedness maintained at follow-up. Parent satisfaction with the program was high. CONCLUSIONS: Results support more controlled evaluations of family-based intervention to improve young sibling adaptation to CI/DD.
2005-12
Lobato DJ; Kao BT
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi054" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi054</a>
A comparison of distraction strategies for venipuncture distress in children
PedPal Lit
2005
MacLaren JE; Cohen LL
Journal of Pediatric Psychology
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsi062" target="_blank" rel="noreferrer">10.1093/jpepsy/jsi062</a>
Attention and Memory Functioning Among Pediatric Patients with Medulloblastoma
PedPal Lit
2005
Reeves CB; Palmer SL; Reddick WE; Merchant TE; Buchanan GM; Gajjar A; Mulhern RK
Journal of Pediatric Psychology
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj019" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj019</a>
Brief report: psychosocial adjustment in adolescents with inflammatory bowel disease
Female; Humans; Male; United States; Family Relations; Social Adjustment; Case-Control Studies; adolescent; Adaptation; Psychological; Adolescent Transitions; Inflammatory Bowel Diseases/psychology
BACKGROUND: Inflammatory bowel disease (IBD) is an ideal disease for investigating adolescent adjustment to chronic illness, given its embarrassing, socially limiting, appearance-changing symptoms and adolescent onset. OBJECTIVE: To compare psychosocial adjustment among adolescents with a chronic illness to that of healthy adolescents and examine the role of adolescent disease onset. METHODS: Participants were 50 adolescents with IBD and their parents, and parents of 42 healthy comparison adolescents who completed questionnaires assessing behavioral, emotional, social, and family functioning. RESULTS: Adolescents with IBD were reported to have worse anxious and/or depressed and social problems than healthy adolescents. More adolescents with IBD were reported to have clinically significant social problems. Those diagnosed during adolescence were reported to have significantly worse social competence scores. CONCLUSIONS: Adolescents with a chronic illness such as IBD may be at higher risk for specific psychosocial difficulties than healthy adolescents. Diagnosis of a chronic illness during adolescence may have implications for social functioning.
2006
Mackner LM; Crandall WV
Journal of Pediatric Psychology
2006
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj023" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj023</a>
Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis
Child; Female; Humans; Male; Prospective Studies; Self Concept; Longitudinal Studies; Sick Role; Social Adjustment; Conflict (Psychology); Motivation; Body Image; Stress; adolescent; Adaptation; Psychological; Models; Family/psychology; Statistical; Adolescent Transitions; Parents/psychology; Psychological/complications; Social Behavior; Educational Status; Individuation; Intelligence; Spinal Dysraphism/psychology
OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This prospective longitudinal study includes 68 families of children with spina bifida and 68 comparison families of healthy children. Multimethod, multiinformant data were evaluated via optimal data analysis (ODA) and classification tree analysis (CTA) techniques. RESULTS: Factors best predicting psychosocial adaptation in early adolescence included (a) intrinsic motivation, (b) estimated verbal IQ, (c) behavioral conduct, (d) coping style, and (e) physical appearance. There were no significant group (spina bifida vs. able-bodied) effects. CONCLUSIONS: The final classification model correctly classified 77.8% of the total sample, indicating that this model had significant predictive capabilities. Results suggested that processes leading to psychosocial adaptation may be similar for youth with and without chronic illness.
2006
Coakley RM; Holmbeck GN; Bryant FB
Journal of Pediatric Psychology
2006
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj032" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj032</a>
Adaptive style and symptoms of posttraumatic stress in children with cancer and their parents
PedPal Lit; Extramural Research Support; N.I.H.; Adaptation; Non-U.S. Gov't Stress Disorders; Post-Traumatic/epidemiology/psychology Survivors/psychology United States/epidemiology; Psychological Adolescent Adult Analysis of Variance Child Cross-Sectional Studies Defense Mechanisms Female Humans Male Neoplasms/psychology Parents/psychologyPersonality Research Support
OBJECTIVE: To examine symptom levels of posttraumatic stress (PTS) in children with cancer and their parents as a function of patient and parent adaptive style. METHOD: Participants included 162 pediatric cancer patients and their parents. Patients completed self-report measures of PTS and adaptive style. Parents reported on their own adaptive style and PTS, as well as levels of PTS in their child. RESULTS: Adaptive style was a significant correlate of PTS. Children identified as low anxious (LA) or repressors (REP) obtained lower levels of PTS than did high anxious (HA) children, both by self-report and parent report. Parents identified as LA or REP self-reported lower levels of PTS than HA and also reported lower levels of PTS in their children. CONCLUSIONS: Patient and parent adaptive style are significant determinants of PTS in the pediatric oncology setting. These findings, in combination with the generally low levels of PTS in the pediatric oncology population, raise questions about the utility of the posttraumatic stress model for understanding the experiences of children with cancer, although such a model may be more applicable to parental response.
2006
Phipps S; Larson S; Long A; Rai SN
Journal of Pediatric Psychology
2006
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj033" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj033</a>
Development and validation of the parent experience of child illness
Family; Parents; PedPal Lit; Caregiver; Child Illness
Objective To develop a measure of parent adjustment related to caring for a child with achronic illness and to evaluate the reliability and validity of the measure with a group of parentsof children with brain tumors. Methods One-hundred forty-nine parents of patients(age <1–17 years) diagnosed with a brain tumor were assessed using the 25-item self-reportParent Experience of Child Illness (PECI). Internal consistency, construct validity, and factorstructure were assessed. Results Exploratory factor analysis yielded four theoreticallycoherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrowand Anger, and Long-term Uncertainty. Internal reliability for the PECI scales ranged from.72 to .89, suggesting acceptable reliability. As evidence of construct validity, the PECI scalesshow significant, positive correlations with scales from established measures of parentadjustment. Conclusion The PECI augments the current literature by providing a briefmeasure of parents’ subjective distress and perceived Emotional Resources, domains that arecritical but understudied in children with chronic illness and their caregivers.
2005
Bonner MJ; Hardy KK; Guill AB; McLaughlin C; Schweitzer H; Carter K
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj034" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj034</a>
Children's Appraisal and Coping with Pain: Relation to Maternal Ratings of Worry and Restriction in Family Activities
PedPal Lit
Objective To examine the relation of children's pain severity, perceived pain threat, and passive coping to maternal worry and family activities. Methods We assessed pain severity, perceived threat (conceptualized as beliefs about pain seriousness and coping ability), and coping strategies in 130 patients with chronic abdominal pain. Mothers rated the impact of the child's health on maternal worry and family activities. Results Controlling for pain severity, higher pain threat was associated with maternal reports of greater worry and limitations in family activities due to the child's health. Children's use of passive-coping strategies was not related to maternal worry or family activity limitations. Conclusions Health care providers should assess patients' pain beliefs, correct misperceptions about pain seriousness, and help increase patients' perceived efficacy in coping with pain.
2005
Lipani TA; Walker LS
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj038" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj038</a>
Paternal Involvement in the Management of Pediatric Chronic Diseases: Associations with Adherence, Quality of Life, and Health Status
PedPal Lit
2005
Wysocki T; Gavin L
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj042" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj042</a>
Associations of paternal involvement in disease management with maternal and family outcomes in families with children with chronic illness
PedPal Lit
2005
Gavin L; Wysocki T
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj043" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj043</a>
Introduction to the Special Issue: Posttraumatic Stress Related to Pediatric Illness and Injury
PedPal Lit
2005
Kassam-Adams N
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj052" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj052</a>
Risk of Posttraumatic Stress Symptoms: A Comparison of Child Survivors of Pediatric Cancer and Parental Bereavement
PedPal Lit
Objective To compare the risk of posttraumatic stress (PTS) symptoms and the mediating effect of perceived future threat on the risk of PTS symptoms among survivors of pediatric cancer and children who had a parent die. Methods Seventy-eight children (39 survivors of cancer, 39 bereaved) completed self-report measures of PTS symptoms, depression, anxiety, and perceived risk of future threat for the event they experienced. Results The children who lost a parent reported significantly more PTS symptoms than the survivors of cancer. The effect of group status (survivor of cancer vs. bereaved) on PTS symptomatology was partly mediated by the children's perceived risk of future threat. Conclusions The rate of PTS symptoms was found to be higher among children who had lost a parent than among survivors of pediatric cancer. This difference may partly be explained by their perceived risk of a future threat. Clinical implications are discussed.
2005
Stoppelbein LA; Greening L; Elkin TD
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj055" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj055</a>
Catastrophic Thinking About Pain is Independently Associated with Pain Severity, Disability, and Somatic Complaints in School Children and Children with Chronic Pain
PedPal Lit
Objective To investigate the value of pain catastrophizing in explaining pain, disability, and somatic complaints, beyond negative affectivity (NA). Method Two cross-sectional studies, one in a sample of school children (n = 193) and a second in a clinical sample of children with recurrent or chronic pain (n = 43), were conducted. In both studies, measures of pain catastrophizing and NA were examined for their ability to explain pain, disability, and somatic complaints. Results In both studies, pain catastrophizing significantly accounted for the variance of pain, disability, and somatic complaints, beyond the effects of age, sex, and NA. Furthermore, pain catastrophizing significantly mediated the relationship between NA and somatic complaints in both studies and between NA and functional disability in study 1. Conclusions Results suggest the importance of assessing for pain catastrophizing in children. Pain catastrophizing is further discussed in terms of communicating distress to significant others.
2005
Vervoort T; Goubert L; Eccleston C; Bijttebier P; Crombez G
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj059" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj059</a>
The Impact of Chronic Pain on Adolescents: A Review of Previously Used Measures
PedPal Lit
2005
Eccleston C; Jordan AL; Crombez G
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj061" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj061</a>
Long-term Parental and Family Adaptation Following Pediatric Brain Injury
PedPal Lit
2005
Wade SL; Gerry TH; Owen YK; Drotar D; Stancin T; Minich NM; Schluchter M
Journal of Pediatric Psychology
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj077" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj077</a>
Scholarly Literature Review: Efficacy of Psychological Interventions for Pediatric Chronic Illnesses
PedPal Lit; Chronic disease; Intervention; Interventions; Chronic Illness; Effect Size; Pediatric Illness; Validity
Objective To review empirical studies of the efficacy of psychological interventions as adjuvanttherapies for children with pediatric diabetes, cancer, cystic fibrosis, and sickle celldisease. Methods A search was conducted for qualifying studies published since 1980. Onlystudies meeting basic criteria for external and internal validity were included. Nineteen studieswere identified, providing data on 62 outcome variables. Effect sizes (ESs) were analyzed by illnesstype, intervention type, and strength of internal and external validity of the researchdesign. Results Overall, interventions were associated with large ESs, which were notsignificantly moderated by illness type or intervention type. However, larger ESs were associatedwith lower scores on validity of research design. Conclusions Adjuvant psychologicalinterventions for pediatric chronic illnesses appear in general to be efficacious, associated with alarge mean ES across a range of outcome variables. However, until more studies have beencompleted using stronger research designs, only tentative conclusions can be drawn.
2006
Beale IL
Journal of Pediatric Psychology
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj079" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj079</a>
Psychological Distress and the Impact of Social Support on Fathers and Mothers of Pediatric Cancer Patients: Long-Term Prospective Results
Child; Humans; Adult; Questionnaires; Follow-Up Studies; Prospective Studies; PedPal Lit; Mothers/psychology; Neoplasms; social support; Parent caregivers; Depression/diagnosis/psychology; Fathers/psychology
2005
Wijnberg-Williams BJ; Kamps WA; Klip EC; Hoekstra-Weebers JE
Journal of Pediatric Psychology
2005
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Journal Article
<a href="http://doi.org/10.1093/jpepsy/jsj087" target="_blank" rel="noreferrer">10.1093/jpepsy/jsj087</a>
The impact on health-related quality of life from non-steroidal anti-inflammatory drugs, methotrexate, or steroids in treatment for juvenile idiopathic arthritis
Child; Female; Humans; Male; Follow-Up Studies; Health Status; Multivariate Analysis; quality of life; adolescent; Preschool; PedPal Lit; infant; Comparative Study; Arthritis; Anti-Inflammatory Agents; Antirheumatic Agents/adverse effects/therapeutic use; Glucocorticoids/adverse effects/therapeutic use; Juvenile Rheumatoid/drug therapy; Methotrexate/adverse effects/therapeutic use; Methylprednisolone/adverse effects/therapeutic use; Non-Steroidal/adverse effects/therapeutic use
OBJECTIVE: To assess and compare the impact of medication treatments on health-related quality of life (HRQOL), family function, and medical status in children with juvenile idiopathic arthritis (JIA). METHODS: Fifty-seven children diagnosed with JIA were assessed by a pediatric rheumatologist and placed into one of three treatment groups: (1) non-steroidal anti-inflammatory; (2) methotrexate; or (3) steroids via IV methylprednisolone. Questionnaires were administered at baseline and 4-month follow-up. The attending pediatric rheumatologist provided additional medical information. RESULTS: Data document the impact of JIA on HRQOL, particularly on physical and pain domains. Steroid patients experienced improved HRQOL at follow-up relative to other groups, despite reporting more problems with side effects. CONCLUSION: These results demonstrate positive benefits of steroids in treating JIA children, despite the greatest incidence of adverse side effects.
2006
Riddle R; Ryser CN; Morton AA; Sampson JD; Browne RH; Punaro MG; Gatchel RJ
Journal of Pediatric Psychology
2006
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Journal Article
Psychological Correlates of Depression in Children with Recurrent Abdominal Pain
PedPal Lit
Objective To examine the associations between coping style, social support, self-efficacy, locus of control, maternal adjustment, and depressive symptoms in children with recurrent abdominal pain (RAP) of childhood. Methods Fifty children with RAP (8-18 years) and their mothers were recruited from a gastroenterology clinic (GI) and community medical practices. Participants completed questionnaires that assessed coping style, social support, self-efficacy, locus of control, maternal adjustment, and psychological adjustment. Results Passive coping strategies such as isolating oneself from others, catastrophizing, and behavioral disengagement were associated with more child-reported depressive symptoms. Higher levels of self-efficacy and greater social support from teachers and classmates were associated with fewer child-reported depressive symptoms. Higher levels of maternal adjustment problems, higher social support from parents, and lower social support from classmates were associated with maternal reports of more child internalizing symptoms. Conclusions These findings suggest that coping style, self-efficacy, social support, and maternal adjustment are correlates of depressive symptoms in children with RAP.
2006
Kaminsky L; Robertson M; Dewey D
Journal of Pediatric Psychology
2006
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Journal Article