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1.
J Fam Psychol ; 37(5): 635-646, 2023 Aug.
Article in English | MEDLINE | ID: mdl-36892923

ABSTRACT

Elevated child and caregiver psychopathology are observed in families of children with cancer, with a subset developing clinically significant symptoms. This study examines whether caregivers' resting respiratory sinus arrhythmia (RSA) and observed emotion regulation (ER) are protective against caregiver and child psychopathology during the first year of pediatric cancer treatment. Primary caregivers of children recently diagnosed with cancer (N = 159; child Mage = 5.6 years; children 48% male, 52% female) completed 12 monthly questionnaires. At Month 3, primary caregivers were interviewed about their experiences of emotions, and their resting RSA was measured. Data were analyzed using multilevel models. Observed ER was associated with lower caregiver anxiety, depression, and posttraumatic stress symptoms (PTSS) 1 year postdiagnosis but was not associated with children's symptoms. Resting RSA had a significant positive association with child depression/anxiety at the start of treatment and Month 12 child PTSS. Findings suggest that caregivers would benefit from interventions to manage their negative emotions at the start of cancer treatment. Additionally, caregivers who are more physiologically regulated may be more attuned to their children's negative emotions. Our findings highlight the importance of taking a multimethod approach to understanding how ER impacts functioning. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Subject(s)
Emotional Regulation , Mental Disorders , Neoplasms , Child , Humans , Male , Female , Child, Preschool , Caregivers/psychology , Emotions/physiology , Anxiety , Neoplasms/therapy
2.
J Palliat Med ; 26(5): 674-683, 2023 05.
Article in English | MEDLINE | ID: mdl-36480799

ABSTRACT

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0-835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended.


Subject(s)
Critical Illness , Intensive Care Units, Neonatal , Infant, Newborn , Infant , Humans , Male , Child , Aged , Female , Retrospective Studies , Palliative Care , Death
3.
Health Psychol ; 41(1): 43-52, 2022 Jan.
Article in English | MEDLINE | ID: mdl-34855417

ABSTRACT

OBJECTIVE: Previous work has examined family income and material hardship in pediatric cancer. However, few studies have focused on perceived financial strain (PFS), or the extent to which caregivers perceive financial stress and worry related to their child's cancer. The current study addresses this gap by a) describing the trajectory of perceived financial strain over the first year of pediatric cancer treatment; b) examining sociodemographic predictors of that trajectory; and c) examining associations between PFS and caregiver and child psychological adjustment. METHOD: Primary caregivers of children (Mage = 6.31) recently diagnosed with cancer provided 12 monthly reports of their own perceived financial strain and depression, anxiety, and posttraumatic stress symptoms, as well as their child's internalizing and externalizing symptoms. Data were analyzed using multilevel models. RESULTS: Caregiver PFS decreased over the first year of treatment. Nonmarried caregivers and those with lower income reported higher levels of PFS over time. Caregivers with higher PFS relative to other caregivers and relative to their own average PFS in a given month experienced psychological maladjustment. PFS was not associated with child adjustment. CONCLUSIONS: On average caregivers perceive less financial strain over the first year of treatment; however, nonmarried caregivers and those with lower income are at risk for higher PFS over time, and PFS may contribute to psychological maladjustment in caregivers. Caregivers may benefit from psychosocial support focused on managing financial strain. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Subject(s)
Caregivers , Neoplasms , Child , Emotional Adjustment , Family , Humans , Neoplasms/therapy , Stress, Psychological
4.
Pediatr Blood Cancer ; 68(9): e29220, 2021 09.
Article in English | MEDLINE | ID: mdl-34245215

ABSTRACT

BACKGROUND: Central nervous system (CNS)-directed treatments can cause long-term academic, social, and emotional difficulties for children with cancer. However, limited research has examined the emergence of problems longitudinally and has often stratified risk by diagnosis alone. Therefore, this study compared competence and adjustment in children, who did and did not receive CNS-directed treatment, over the first 3 years following a cancer diagnosis. PROCEDURE: Mothers, fathers, and children (ages 5-18 years at diagnosis) from 217 families reported on the child's competence (academic, social) and adjustment (anxious/depressed, withdrawn/depressed) near a new cancer diagnosis or relapse and 3 years later. Children were categorized into CNS-directed treatment (n = 112; including cranial radiation, intrathecal chemotherapy, and/or neurosurgery) and non-CNS-directed treatment (n = 105) groups. RESULTS: At enrollment, there were few differences in competence and emotional adjustment among children based on treatment or diagnostic group. At 3 years, mothers and fathers reported poorer social competence for the CNS-directed treatment group, and fathers reported poorer school competence for the CNS-directed treatment group. Over time, father ratings of social competence increased for the non-CNS-directed treatment group, but not the CNS-directed treatment group. While father ratings of academic competence declined for the CNS-directed treatment group, mother ratings declined the most for children diagnosed with a brain tumor. All children demonstrated higher anxious/depressed scores over time. CONCLUSIONS: CNS-directed treatment may be a valuable indicator to identify childhood cancer survivors at risk for poor competence during early survivorship. Follow-up screening and supportive services are recommended, as well as additional longitudinal research.


Subject(s)
Brain Neoplasms , Cancer Survivors , Social Adjustment , Adolescent , Anxiety , Brain Neoplasms/psychology , Brain Neoplasms/therapy , Central Nervous System , Child , Child, Preschool , Cranial Irradiation , Depression , Fathers , Female , Humans , Male , Mothers , Neoplasm Recurrence, Local
5.
Health Psychol ; 40(5): 295-304, 2021 May.
Article in English | MEDLINE | ID: mdl-34152783

ABSTRACT

OBJECTIVE: To examine effects of stress on caregiver psychological adjustment during the first year of pediatric cancer. METHOD: Caregivers (N = 159) of children with cancer completed monthly questionnaires assessing domains of caregiver psychological adjustment (depression, anxiety, and posttraumatic stress symptoms) and stress (general life stress, treatment-related stress, caregiver perceptions of treatment intensity and life threat). Effects of stress were assessed at two levels to examine whether within-person changes in stress predicted concurrent changes in caregiver adjustment and whether average stress was associated with between-person differences in caregiver adjustment trajectories. RESULTS: Overall, higher levels of stress factors were associated with poorer caregiver adjustment at both the between- and within-person levels, with high average levels of treatment-related stress and general life stress emerging as leading predictors of worse adjustment. CONCLUSIONS: Both types of stressors, those directly related as well as unrelated to a child's cancer, contribute uniquely to caregiver distress. Caregiver distress is impacted by both overall levels of stress over time as well as month-to-month changes in stress. Implications for informing care for at-risk caregivers are discussed. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Subject(s)
Caregivers/psychology , Emotional Adjustment , Neoplasms/psychology , Parents/psychology , Stress, Psychological/psychology , Adolescent , Adult , Caregivers/statistics & numerical data , Child , Child, Preschool , Female , Humans , Male , Neoplasms/therapy , Surveys and Questionnaires
6.
Psychooncology ; 30(6): 928-935, 2021 06.
Article in English | MEDLINE | ID: mdl-33724595

ABSTRACT

OBJECTIVE: After diagnosis, caregivers of children with cancer, particularly mothers or primary caregivers (PCs), often show elevated depressive symptoms which may negatively impact family functioning. We tested PC and secondary caregiver (SC) depressive symptoms as predictors of family, co-parenting, and marital functioning and whether having a non-depressed SC buffers against potential negative effects of PC depressive symptoms. METHODS: Families (N = 137) were recruited from two major children's hospitals following a diagnosis of pediatric cancer. Caregivers completed self-report measures of depressive symptoms (Center for Epidemiological Studies-Depression Scale; Depression, Anxiety, and Stress Scale) and marital functioning (Dyadic Adjustment Scale) at 1-month post-diagnosis. A subset of families (n = 75) completed videotaped interaction tasks at approximately 3-months post-diagnosis that were coded for family and co-parenting interactions. RESULTS: Higher PC depressive symptoms at 1-month post-diagnosis was associated with higher adaptability and lower conflict in family functioning. PC depressive symptoms were also associated lower dyadic consensus and lower dyadic satisfaction. SC depressive symptoms were not significantly associated with any family/co-parenting/marital functioning variables. Significant interaction analyses suggested that SC depressive symptoms moderated the effect of PC depressive symptoms on family cohesion, withdrawn parenting, and affective expression in the marriage, such that the relationship between PC depressive symptoms and poorer functioning was attenuated when SC depressive symptoms were at low or average levels. CONCLUSIONS: Having a nondepressed SC buffered against negative effects of PC depressive symptoms on certain domains of family, coparenting, and marital functioning. SCs may play a protective role for families of children with cancer.


Subject(s)
Caregivers , Neoplasms , Anxiety , Child , Depression/diagnosis , Female , Humans , Parenting
7.
J Child Fam Stud ; 29(4): 1081-1093, 2020 Apr.
Article in English | MEDLINE | ID: mdl-33343178

ABSTRACT

OBJECTIVES: Bereaved siblings experience more externalizing problems compared to non-bereaved peers and norms; however, the mechanisms explaining this phenomenon have not been empirically examined. This study tested the serial indirect effects of sibling bereavement on adolescents' externalizing problems through parent distress (i.e., internalizing symptoms) and parenting (i.e., parenting behaviors, parent-adolescent communication). METHODS: During home visits, 72 bereaved adolescents (ages 10-18) whose brother/sister died from cancer and 60 comparison peers reported about their externalizing problems and their mothers' and fathers' parenting behaviors (warmth, behavioral control, psychological control) and parent-adolescent communication (open communication, problematic communication). Mothers and fathers reported their own internalizing symptoms. RESULTS: Bereaved siblings reported more externalizing problems (p =.048) and bereaved mothers reported more internalizing symptoms relative to the comparison group (p =.015). Serial multiple mediation models indicated that elevated externalizing problems were partially explained by both bereaved mothers' internalizing symptoms and parenting and communication (less warmth [CI: 0.04, 0.86], more psychological control [CI: 0.03, 0.66], and more problematic mother-adolescent communication [CI: 0.03, 0.79]), with a significant indirect effect also emerging for open mother-adolescent communication [CI: 0.05, 1.59]. Bereaved fathers did not significantly differ in internalizing symptoms from comparison fathers (p =.453), and no significant indirect effects emerged for fathers. CONCLUSIONS: Elevated externalizing problems in bereaved siblings may result from mothers' distress and the impact on their parenting and communication. Targeting adjustment and parenting in bereaved mothers following a child's death may reduce externalizing problems in bereaved siblings. Research to evaluate family-centered interventions is needed.

8.
J Pain Symptom Manage ; 59(5): 1001-1008, 2020 05.
Article in English | MEDLINE | ID: mdl-31837457

ABSTRACT

CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering. OBJECTIVES: To examine bereaved parents' perceptions of infant suffering in the NICU. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.


Subject(s)
Intensive Care Units, Neonatal , Parents , Female , Humans , Infant , Infant, Newborn , Mothers , Perception
9.
J Fam Psychol ; 32(8): 1087-1096, 2018 Dec.
Article in English | MEDLINE | ID: mdl-30211572

ABSTRACT

Research has shown that children experience increased emotional distress when engaging in emotional caretaking of a parent. The current study is the first to examine this process in families in which the source of the stress is the child's illness. Prospective associations were tested among mothers' depressive symptoms near the time of their child's cancer diagnosis, mothers' expressed distress and their child's emotional caretaking during an interaction task, and child anxious/depressed symptoms at 1 year postdiagnosis. Families (N = 78) were recruited from two pediatric hospitals soon after their child's (Ages 5-18) new diagnosis or relapse of cancer. Mothers reported on their own depressive symptoms and their child's anxious/depressed symptoms near the time of diagnosis or recurrence (Time 1) and 1 year later (Time 3). At Time 2 (4 months after Time 1), mother-child dyads completed a video-recorded discussion of their experience with cancer that was coded for observed maternal expressed distress (anxiety, sadness) and observed child emotional caretaking. Maternal expressed distress during the interaction was significantly related to more emotional caretaking behaviors by both boys and girls. Results of a moderated mediation model showed that child emotional caretaking at Time 2 significantly mediated the relation between maternal depressive symptoms at Time 1 and child anxious/depressed symptoms at Time 3 for girls but not for boys. The findings suggest that children's emotional caretaking behaviors contribute to subsequent anxious/depressed symptoms for girls, but not for boys, with cancer. (PsycINFO Database Record (c) 2018 APA, all rights reserved).


Subject(s)
Anxiety Disorders/psychology , Depressive Disorder/psychology , Emotions , Mother-Child Relations/psychology , Mothers/psychology , Neoplasms/psychology , Parenting/psychology , Adaptation, Psychological , Adolescent , Adult , Anxiety Disorders/diagnosis , Cancer Care Facilities , Child , Child, Preschool , Depressive Disorder/diagnosis , Female , Humans , Longitudinal Studies , Male , Prospective Studies , United States
10.
Sch Psychol Q ; 33(3): 363-371, 2018 Sep.
Article in English | MEDLINE | ID: mdl-30234359

ABSTRACT

The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings' grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3-12 months after a child's death. Bereaved siblings were 8-18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record


Subject(s)
Bereavement , Schools , Siblings/psychology , Social Support , Students/psychology , Adolescent , Child , Female , Grief , Humans , Male
11.
Psychooncology ; 27(8): 1944-1949, 2018 08.
Article in English | MEDLINE | ID: mdl-29700907

ABSTRACT

OBJECTIVE: To extend the limited research on psychosexual development among childhood cancer survivors, by not only focusing on the prevalence and age of milestone attainment, but also survivors' attitudes toward the timing of reaching such milestones. METHODS: Adult survivors of childhood cancer (N = 90; Mage  = 29.8, SD = 5.2), recruited from a US pediatric institution, completed online surveys indicating whether they had reached 5 milestones of psychosexual development (ie, first kiss, first boy-/girlfriend, first physical intimacy, sexual debut, first time in love), age at attainment, and perceptions about the timing (ie, right time, wished it had happened earlier, wished they had waited). RESULTS: Almost all survivors had reached each milestone (≥90%), except for sexual debut (83.3%). Survivors reported their first kiss as the earliest milestone at age 14.6 (N = 82, 92%) and falling in love as the latest milestone at age 18.8 (N = 80; 90%). This timing did not differ by sex/cancer-specific factors. Most survivors (~60%) felt they reached each milestone at the right time. Compared with US normative data, both male and female survivors were less likely to have experienced their sexual debut and were approximately 1.5 years older at sexual debut. Nevertheless, 59% of survivors felt that this timing was right and 31% wished they had waited longer. CONCLUSIONS: This is the first study to demonstrate that although childhood cancer survivors may delay some aspects of psychosexual development, most are satisfied with this timing. Research and clinical practice should emphasize survivors' perceptions/satisfaction toward psychosexual development rather than focusing only on normative milestone attainment.


Subject(s)
Adult Survivors of Child Adverse Events , Cancer Survivors , Neoplasms , Personal Satisfaction , Psychosexual Development , Adolescent , Adult , Adult Survivors of Child Adverse Events/psychology , Cancer Survivors/psychology , Child , Female , Humans , Male , Neoplasms/psychology , Psychosexual Development/physiology
12.
J Pediatr Psychol ; 43(7): 769-778, 2018 08 01.
Article in English | MEDLINE | ID: mdl-29562288

ABSTRACT

Objective: When a child is diagnosed with cancer, problems may arise in family relationships and negatively affect child adjustment. The current study examined patterns of spillover between marital and parent-child relationships to identify targets for intervention aimed at ameliorating family conflict. Method: Families (N = 117) were recruited from two US children's hospitals within 2-week postdiagnosis to participate in a short-term prospective longitudinal study. Children with cancer were 2-10 years old (M = 5.42 years, SD = 2.59). Primary caregivers provided reports of marital and parent-child conflict at 1-, 6-, and 12-month postdiagnosis. Results: Results indicated that a unidirectional model of spillover from the marital to the parent-child relationship best explained the data. In terms of specific temporal patterns, lower marital adjustment soon after diagnosis was associated with an increase in parent-child conflict 6 months later, though this pattern was not repeated in the latter 6 months of treatment. Conclusion: Targeting problems in marital relationships soon after diagnosis may prevent conflict from developing in the parent-child relationship.


Subject(s)
Family Conflict/psychology , Marriage/psychology , Neoplasms/psychology , Neoplasms/therapy , Parent-Child Relations , Adaptation, Psychological , Child , Child, Preschool , Family Relations/psychology , Female , Humans , Longitudinal Studies , Male , Marriage/statistics & numerical data , Parents/psychology , Prospective Studies , Stress, Psychological/psychology , United States
13.
J Adolesc Young Adult Oncol ; 7(1): 72-78, 2018 02.
Article in English | MEDLINE | ID: mdl-28783412

ABSTRACT

PURPOSE: This study focused on self-perceived mate value of young adult survivors of childhood cancer relative to healthy peers. Qualitative studies indicate potential problems surrounding romantic relationships among survivors, but systematic studies are missing. METHODS: One-hundred forty-nine childhood cancer survivors and 149 matched controls completed online questionnaires about their mate value, social comparison strategies (i.e., upward/downward identifying/contrasting strategies), and marital status. Survivors and controls were aged 20-40 (M = 27.8), 55% were female, and survivors had been treated for brain tumors (n = 52; 35%), leukemia (n = 42; 28%), lymphoma (n = 31; 21%), or other solid tumors (n = 24; 16%) at 5-33 years before study participation. RESULTS: Survivors and controls did not differ on overall mate value, but on individual characteristics: Survivors thought they had a better sense of humor (d = 0.36), were more loyal (d = 0.32), had higher social status (d = 0.26), and were more ambitious (d = 0.19), while also considering themselves less sexually adventurous (d = 0.31), less healthy (d = 0.26), having less desire to have children (d = 0.21), and a less attractive face (d = 0.20). Higher mate value was related to being partnered, more upward-identifying, less upward-contrasting, and less downward-identifying strategies. Moreover, less downward-identifying was associated with higher mate value in survivors, but not controls; whereas greater downward-contrasting was associated with higher mate value among controls only (R2 = 30.8%). CONCLUSIONS: Survivors do not generally view themselves as less valuable (potential) romantic partners, but they evaluate different characteristics either more positively or more negatively. Social comparison strategies offer targetable points of interventions to intervene on negative self-evaluations, potentially enhancing well-being.


Subject(s)
Neoplasms/mortality , Adolescent , Adult , Child , Child, Preschool , Female , Humans , Male , Neoplasms/therapy , Survivors , Young Adult
14.
J Obstet Gynecol Neonatal Nurs ; 46(3): 446-455, 2017.
Article in English | MEDLINE | ID: mdl-28365248

ABSTRACT

OBJECTIVE: To examine associations among parent perceptions of infant symptoms/suffering, parent distress, and decision making about having additional children after an infant's death in the NICU. DESIGN: Mixed-methods pilot study incorporating mailed surveys and qualitative interviews. SETTING: Midwestern Level IV regional referral NICU. PARTICIPANTS: Participants were 42 mothers and 27 fathers whose infants died in the NICU. METHODS: Parents reported on infant symptoms/suffering at end of life and their own grief and posttraumatic stress symptoms. Qualitative interviews explored decision making about having additional children. RESULTS: Approximately two thirds of bereaved parents had another child after their infant's death (62% of mothers, 67% of fathers). Mothers who had another child reported fewer infant symptoms at end of life compared with mothers who did not (p = .002, d = 1.28). Although few mothers exceeded clinical levels of prolonged grief (3%) and posttraumatic stress symptoms (18%), mothers who had another child endorsed fewer symptoms of prolonged grief (p = .001, d = 1.63) and posttraumatic stress (p = .009, d = 1.16). Differences between fathers mirrored these effects but were not significant. Parent interviews generated themes related to decision making about having additional children, including Impact of Infant Death, Facilitators and Barriers, Timing and Trajectories of Decisions, and Not Wanting to Replace the Deceased Child. CONCLUSION: Having another child after infant loss may promote resilience or serve as an indicator of positive adjustment among parents bereaved by infant death in the NICU. Prospective research is necessary to distinguish directional associations and guide evidence-based care.


Subject(s)
Bereavement , Decision Making , Infant Death , Intensive Care Units, Neonatal , Parents/psychology , Siblings , Adult , Cross-Sectional Studies , Female , Humans , Infant , Infant, Newborn , Interviews as Topic , Male , Midwestern United States , Pilot Projects , Pregnancy , Pregnancy Rate , Severity of Illness Index , Stress, Psychological/diagnosis , Stress, Psychological/epidemiology
15.
J Pediatr Psychol ; 42(8): 871-881, 2017 09 01.
Article in English | MEDLINE | ID: mdl-28369400

ABSTRACT

Objectives: To examine parent-child communication (i.e., openness, problems) and child adjustment among youth with advanced or non-advanced cancer and comparison children. Methods: Families (n = 125) were recruited after a child's diagnosis/relapse and stratified by advanced (n = 55) or non-advanced (n = 70) disease. Comparison children (n = 60) were recruited from local schools. Children (ages 10-17) reported on communication (Parent-Adolescent Communication Scale) with both parents, while mothers reported on child adjustment (Child Behavior Checklist) at enrollment (T1) and one year (T2). Results: Openness/problems in communication did not differ across groups at T1, but problems with fathers were higher among children with non-advanced cancer versus comparisons at T2. Openness declined for all fathers, while changes in problems varied by group for both parents. T1 communication predicted later adjustment only for children with advanced cancer. Conclusions: Communication plays an important role, particularly for children with advanced cancer. Additional research with families affected by life-limiting conditions is needed.


Subject(s)
Communication , Emotional Adjustment , Neoplasms/psychology , Parent-Child Relations , Adolescent , Adult , Case-Control Studies , Child , Child, Preschool , Female , Humans , Longitudinal Studies , Male , Neoplasm Recurrence, Local/pathology , Neoplasm Recurrence, Local/psychology , Neoplasms/diagnosis , Neoplasms/pathology
16.
Adv Neonatal Care ; 17(3): 175-183, 2017 Jun.
Article in English | MEDLINE | ID: mdl-28195841

ABSTRACT

BACKGROUND: Despite technological advances in the neonatal intensive care unit, not all infants survive. Limited research has focused on infants' symptoms and suffering at end of life (EOL) from multiple perspectives. PURPOSE: To compare retrospective parent report and electronic medical record (EMR) documentation of symptoms and to examine associations with parent perceptions of infants suffering at EOL. METHODS/SEARCH STRATEGY: Bereaved parents of 40 infants (40 mothers and 27 fathers) retrospectively reported on their perceptions of infant symptoms and suffering during the last week of life. EMRs were also reviewed. FINDINGS/RESULTS: Parents were asked about their observations of 23 symptoms. Within the 27 parental dyads, mothers reported 6.15 symptoms (standard deviation = 3.75), which was not significantly different from fathers' report of 5.67 symptoms (standard deviation = 5.11). Respiratory distress, agitation, and pain were most common according to mothers and EMR, whereas respiratory distress, agitation, and lethargy were most common according to fathers. Few differences were found between mothers, fathers, and EMRs. However, missing data (range: 0%-20%) indicated that some parents had challenges assessing symptoms. Parents reported that the worst symptom was respiratory distress. In addition, parents reported moderate infant suffering, which was correlated with the total number of symptoms. IMPLICATIONS FOR PRACTICE: Parents demonstrate awareness of their infant's symptoms at EOL, and these observations should be valued as they closely parallel EMR documentation. However, some parents did have difficulty reporting symptoms, highlighting the importance of education. IMPLICATIONS FOR RESEARCH: Future larger sample research should prospectively examine parent perceptions of infant symptom burden, suffering, and associations with other infant and parent outcomes (eg, decision making and grief).


Subject(s)
Attitude to Death , Fathers/psychology , Intensive Care Units, Neonatal , Mothers/psychology , Terminal Care/psychology , Adult , Decision Making , Electronic Health Records , Female , Humans , Infant , Infant, Newborn , Male , Pain/psychology , Parents , Respiratory Distress Syndrome, Newborn/psychology , Retrospective Studies
17.
Cancer ; 123(10): 1869-1876, 2017 05 15.
Article in English | MEDLINE | ID: mdl-28165611

ABSTRACT

BACKGROUND: Risk factors for impairment in psychosexual development and satisfaction among adult survivors of childhood cancer are poorly understood. The authors compared psychosexual outcomes between survivors and healthy controls, and tested whether at-risk survivors can be identified by 1) treatment neurotoxicity or 2) diagnosis. METHODS: A total of 144 young adult survivors of childhood cancer and 144 matched controls completed questionnaires regarding psychosexual development, sexual satisfaction, and satisfaction with relationship status. Survivors were aged 20 to 40 years and were 5 to 34 years after diagnosis. Using medical chart data, survivors were divided into non-neurotoxic (48 survivors), low-dose (36 survivors), and high-dose (58 survivors) neurotoxic treatment groups. RESULTS: Apart from having fewer lifetime sex partners, survivors did not appear to differ from controls. However, survivors of brain tumors and any survivor who received high-dose neurotoxic treatment reported the lowest rates of achieving milestones of psychosexual development, whereas sexual and relationship status satisfaction were found to be related to relationship status. Neurotoxic treatment intensity further distinguished between survivors of brain tumors with and without psychosexual impairment. CONCLUSIONS: The intensity of neurotoxic treatment may be a valuable indicator of risk for psychosexual impairment relative to diagnosis alone. Health care providers should assess romantic/sexual problems among survivors at risk and make referrals if needed. Cancer 2017;123:1869-1876. © 2017 American Cancer Society.


Subject(s)
Neoplasms/therapy , Neurotoxicity Syndromes/epidemiology , Personal Satisfaction , Psychosexual Development , Reproductive Health , Survivors , Adult , Antineoplastic Agents/adverse effects , Brain Neoplasms/therapy , Case-Control Studies , Cranial Irradiation/adverse effects , Cytarabine/adverse effects , Female , Humans , Injections, Spinal , Leukemia/therapy , Lymphoma/therapy , Male , Methotrexate/adverse effects , Neurotoxicity Syndromes/etiology , Orgasm , Risk Factors , Sexual Partners , Surveys and Questionnaires , Thiotepa/adverse effects , Young Adult
18.
Pediatr Blood Cancer ; 64(9)2017 Sep.
Article in English | MEDLINE | ID: mdl-28121066

ABSTRACT

BACKGROUND: Families often express a need for additional information about neurocognitive late effects (NCLE) after a pediatric cancer diagnosis. Therefore, we examined: (i) differences in parent, child, and oncologist estimates of risk for NCLE; (ii) whether the estimates of parents and/or children change over time; and (iii) whether estimates are different for children treated with central nervous system (CNS) directed therapies. PROCEDURE: Mothers, fathers, and children (initial age: 5-17, self-report: >10) from 258 families reported their perceived likelihood of the child developing "thinking/learning problems" on a visual analog scale (0-100%) at 2 months (T1), 1 year (T2), and 3 years (T3) following cancer diagnosis/relapse. Oncologists estimated the likelihood of NCLE at T1. Children were separated into groups based on CNS-directed treatment (n = 137; neurosurgery, intrathecal chemotherapy, and/or craniospinal radiation) or no CNS treatment. RESULTS: Mother, father, and child estimates of risk for NCLE were similar to oncologists and to one another around diagnosis (T1). Although there were no significant mean differences, a considerable subset of family members either underestimated their child's risk for NCLE (>40%) or overestimated the risk for NCLE (20%) in comparison to oncologists. At T2 and T3, the estimates of mothers were significantly higher than children. Linear growth curves indicated that mothers' estimates for children with CNS-directed treatment significantly increased throughout the first 3 years of survivorship. CONCLUSIONS: Considering that accurate understanding of NCLE is essential to seeking appropriate assessment and intervention, healthcare providers should focus on implementing family-based education early in treatment and throughout survivorship care.


Subject(s)
Cognition Disorders/epidemiology , Cognition Disorders/etiology , Comprehension , Neoplasms/complications , Parents , Adolescent , Child , Child, Preschool , Female , Humans , Male , Risk , Survivors
19.
J Adolesc Young Adult Oncol ; 6(1): 134-141, 2017 Mar.
Article in English | MEDLINE | ID: mdl-27768513

ABSTRACT

PURPOSE: Childhood cancer is stressful for the entire family. Preoccupation and anxiety surrounding the child's illness may result in parents of children with cancer being overprotective or less emotionally responsive toward their children. Such parenting in response to a negative life event like childhood cancer may cause survivors to be more insecurely attached than healthy peers, which could have downstream effects on survivors' romantic relationships later in life. Therefore, we examined survivors' perspectives on parent behaviors, adult attachment, and marital status among adult survivors of childhood cancer relative to controls. METHODS: One hundred forty-nine young adult survivors and 149 matched controls (Mage = 28, range 20-40) indicated their relationship status (single vs. partnered) and completed standardized questionnaires assessing memories of upbringing (warmth, overprotection, rejection) and adult attachment (avoidance, anxiety). RESULTS: Adult survivors of childhood cancer remembered mothers and fathers as emotionally warmer (d = 0.53/0.30), and mothers as less rejecting than controls (d = 0.30). Adult attachment was overall similar between survivors and controls, but partnered survivors reported particularly low attachment-related anxiety. Childhood cancer was related to higher mother and father warmth, which were associated with lower attachment-related avoidance and in turn with a greater likelihood of being in a relationship. CONCLUSION: Adult childhood cancer survivors did not remember their parents as overprotective, but reported more positive parenting relative to controls; and similar adult attachment and relationship status. The results were unexpected, but offer novel insights for future prospective studies, which are necessary to better understand psychosocial late effects of childhood cancer.


Subject(s)
Cancer Survivors/psychology , Memory/physiology , Neoplasms/psychology , Parent-Child Relations , Parents/psychology , Adult , Female , Humans , Male , Young Adult
20.
Neuropsychology ; 30(7): 830-40, 2016 10.
Article in English | MEDLINE | ID: mdl-27182708

ABSTRACT

OBJECTIVE: Pediatric traumatic brain injury (TBI) may affect children's ability to perform everyday tasks (i.e., adaptive functioning). Guided by the American Association for Intellectual and Developmental Disabilities (AAIDD) model, we explored the association between TBI and adaptive functioning at increasing levels of specificity (global, AAIDD domains, and subscales). We also examined the contributions of executive function and processing speed as mediators of TBI's effects on adaptive functioning. METHOD: Children (ages 8-13) with severe TBI (STBI; n = 19), mild-moderate TBI (MTBI; n = 50), or orthopedic injury (OI; n = 60) completed measures of executive function (TEA-Ch) and processing speed (WISC-IV) an average of 2.7 years postinjury (SD = 1.2; range: 1-5.3). Parents rated children's adaptive functioning (ABAS-II, BASC-2, CASP). RESULTS: STBI had lower global adaptive functioning (η2 = .04-.08) than the MTBI and OI groups, which typically did not differ. Deficits in the STBI group were particularly evident in the social domain, with specific deficits in social participation, leisure, and social adjustment (η2 = .06-.09). Jointly, executive function and processing speed were mediators of STBI's effects on global adaptive functioning and in conceptual and social domains. In the STBI group, executive function mediated social functioning, and processing speed mediated social participation. CONCLUSIONS: Children with STBI experience deficits in adaptive functioning, particularly in social adjustment, with less pronounced deficits in conceptual and practical skills. Executive function and processing speed may mediate the effects of STBI on adaptive functioning. Targeting adaptive functioning and associated cognitive deficits for intervention may enhance quality of life for pediatric TBI survivors. (PsycINFO Database Record


Subject(s)
Adaptation, Psychological , Brain Damage, Chronic/diagnosis , Brain Damage, Chronic/psychology , Brain Injuries, Traumatic/diagnosis , Brain Injuries, Traumatic/psychology , Cognition Disorders/diagnosis , Cognition Disorders/psychology , Executive Function , Reaction Time , Adolescent , Child , Female , Glasgow Coma Scale , Humans , Intelligence Tests , Male , Neuropsychological Tests , Outcome Assessment, Health Care
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