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1.
J Pediatr Nurs ; 68: 44-51, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36333168

RESUMO

PURPOSE: The purpose of this study was to explore relationships between postoperative opioid administration and posttraumatic stress symptoms (PTSS) in preschool-aged children surviving cardiac surgery. DESIGN AND METHODS: This was a cross-sectional, descriptive study using survey administration and medical chart review. Primary caregivers of children aged three to six years who underwent cardiac surgery at our institution between 2018 and 2020 were invited to participate. Opioid administration was calculated according to morphine milligram equivalents and indexed to the child's body weight. Caregivers completed the Young Child Posttraumatic Stress Disorder Checklist to explore child PTSS. We used correlational methods to assess the strength and direction of relationships between postoperative opioid administration and child PTSS. RESULTS: We did not find a statistically significant relationship between total postoperative opioid administration and child PTSS. When analyzing individual opioid agents, morphine did show a significant inverse relationship to YCPC scores (rs = -.57, p = .017) in children with single ventricle physiology. CONCLUSIONS: Total postoperative opioid administration was not statistically significantly related to child PTSS in our sample. Differing patterns of association were noted among children with single- versus bi-ventricular physiology. Postoperative morphine administration was favorably associated with PTSS in children with single-ventricle physiology. PRACTICE IMPLICATIONS: Nurses caring for preschool children who undergo cardiac surgery should anticipate the potential development of PTSS in their patients. Studies using larger sample sizes and longitudinal design are needed to replicate the significant relationship between morphine administration and PTSS in preschoolers with single-ventricle physiology.


Assuntos
Procedimentos Cirúrgicos Cardíacos , Transtornos de Estresse Pós-Traumáticos , Humanos , Pré-Escolar , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Analgésicos Opioides/efeitos adversos , Estudos Transversais , Pais , Procedimentos Cirúrgicos Cardíacos/efeitos adversos , Derivados da Morfina
2.
Palliat Support Care ; 21(5): 829-835, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-35938399

RESUMO

OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHODS: Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULTS: Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.


Assuntos
Luto , Serviços de Saúde Mental , Neoplasias , Criança , Adulto , Feminino , Humanos , Mães/psicologia , Irmãos/psicologia , Neoplasias/terapia , Neoplasias/psicologia
3.
J Clin Psychol Med Settings ; 29(1): 230-238, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34173900

RESUMO

The aim of this study was to examine the impact of end-of-life (EoL) circumstances on grief and internalizing symptoms among bereaved siblings. Bereaved families (N = 88) were recruited from three sites 3-12 months (M = 11.57, SD = 3.48) after their child's death from cancer. One sibling per family aged 8-17 years (M = 12.41, SD = 2.64) was randomly selected to participate. Families completed measures of siblings' grief and internalizing symptoms, as well as a structured interview about circumstances surrounding the death. Mother and sibling reports of EoL circumstances were generally concordant, except there was a discrepancy between mothers and children about whether or not children expected their sibling's death (t(75) = 1.52, p = .018). Mother reports of sibling internalizing symptoms were above the normative mean (t(83) = 4.44, p ≤ .001 (M = 56.01 ± 12.48), with 39% (n = 33) in the borderline/clinical range. Sibling opportunity to say goodbye was associated with greater grief-related growth (t(79) = - 1.95, p = .05). Presence at the death and wishing they had done something differently were both associated with greater grief (t(80) = - 2.08, p = .04 and t(80) = - 2.24, p = .028, respectively) and grief-related growth (t(80) = - 2.01, p = .048 and t(80) = - 2.31, p = .024, respectively). However, findings were primarily unique to sibling report, with few mother-reported effects. The adjustment of bereaved siblings may be affected by certain modifiable circumstances surrounding the death of their brother or sister. A proportion of bereaved siblings had elevated internalizing symptoms irrespective of circumstances at EoL. Further work is needed to understand predictors of adjustment among bereaved siblings to provide better support and optimize their outcomes.


Assuntos
Luto , Neoplasias , Adolescente , Criança , Morte , Pesar , Humanos , Masculino , Irmãos
4.
Death Stud ; 45(4): 313-321, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-31274055

RESUMO

To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement - Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.


Assuntos
Luto , Pesar , Adolescente , Criança , Humanos , Psicometria , Reprodutibilidade dos Testes , Irmãos
5.
Prog Palliat Care ; 29(5): 264-271, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34737490

RESUMO

Participant recruitment for pediatric palliative intervention studies is a chronic challenge for researchers. Digital recruitment strategies, or digital technology-assisted recruitment methods used to remotely reach and enroll research subjects, can help address these recruitment challenges for pediatric palliative care clinical trials. This study (a) describes Facebook recruitment procedures targeting children with cancer and their parents for a pediatric palliative intervention randomized clinical trial, (b) reports recruitment results, and (c) discusses successful strategies to recruit pediatric populations via Facebook advertisements. Researchers used Facebook advertisements to recruit children with advanced cancer (aged 7 to 17 years) for a web-based legacy intervention. Between years 2015 and 2018, our research team enrolled 150 child-parent dyads (N= 300) to participate in the web-based legacy program. Results suggest that Facebook advertisements can be a successful tool to access and recruit pediatric populations with life-threatening conditions. Further research is needed to determine how innovative social-media recruitment strategies could be used in other populations of patients with serious illnesses and their caregivers to further advance the science in palliative care.

6.
Prog Palliat Care ; 29(3): 130-139, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34239227

RESUMO

Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.

7.
Pediatr Transplant ; 23(5): e13451, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31066981

RESUMO

The purpose of this study was to examine the potential predictive value of the Medication Level Variability Index (MLVI) biomarker with graft-versus-host disease (GVHD) in the pediatric hematopoietic stem cell transplant (HSCT) patient during the acute phase post-transplant. This retrospective descriptive study evaluated a total of 406 tacrolimus levels in 64 patients over a varying number of weeks per participant (median = 8, min = 3, max = 11). Patients were followed until Day 100 post-transplant or tacrolimus taper began. A total of 72 episodes of non-therapeutic levels occurred during the acute phase. Of those, 40 (56%) were <5, while 32 (44%) were >15. Approximately 39% (n = 25 of 64) of the participants in the study developed GVHD post-discharge. Those with GVHD had a statistically significantly higher MLVI than those that did not (median = 3.1, IQR = 2.5-4.7 vs 2.3, IQR = 1.6-3.4, respectively, P = 0.024). Using a criterion of MLVI > 3, there was a statistically significant increased likelihood of GVHD (OR = 3.82, 95% CI=1.32 = 11.04, P = 0.013). Area under the curve (AUC) calculation for the sensitivity and specificity of using the MLVI for GVHD was also conducted. The AUC of 0.67 was statistically significant (95% CI 0.53-0.81, P = 0.024). This is the first-known study to report the use of the MLVI in HSCT patients. The MLVI is associated with a main adverse outcome related to HSCT, GVHD. These results are encouraging of a new potential biomarker to evaluate tacrolimus serum assay levels and identify patients at risk for developing GVHD.


Assuntos
Biomarcadores/sangue , Doença Enxerto-Hospedeiro/sangue , Transplante de Células-Tronco Hematopoéticas , Imunossupressores/farmacocinética , Tacrolimo/farmacocinética , Adolescente , Criança , Pré-Escolar , Relação Dose-Resposta a Droga , Feminino , Humanos , Imunossupressores/administração & dosagem , Lactente , Masculino , Valor Preditivo dos Testes , Estudos Retrospectivos , Sensibilidade e Especificidade , Tacrolimo/administração & dosagem , Adulto Jovem
8.
Adv Neonatal Care ; 19(5): E16-E25, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31517645

RESUMO

BACKGROUND: Father involvement in the neonatal intensive care unit (NICU) is important for outcomes of children and should be encouraged. Neonatal nurses have been identified as a major source of support for fathers; yet, nurses have identified obstacles to family-centered care of the father. PURPOSE: The purpose of this article is to present results that broaden the knowledge of factors that affect time NICU nurses spend with fathers. The information presented here is a portion of results from a larger survey that examined factors affecting NICU nurse caring beliefs of fathers. METHODS: This survey study included NICU nurses and was administered anonymously online. Content analysis was completed on responses to open-ended questions. RESULTS: Questions asked nurses about the time they spend with fathers. Nurses described problems with workflow and encouraged family bonding. Some nurses described spending equal amounts of time with both parents, whereas others focused on either the mother or the father. Paternal attributes that affected time nurses spent with fathers included confidence, motivation, level of competence, beliefs, attitudes, and availability. Maternal factors included culture and gatekeeping. Infant factors were level of illness and tolerance to activity. IMPLICATIONS FOR PRACTICE: Unmotivated fathers may benefit from encouragement from nurses to participate in the care of their infants. Nurses can encourage parental partnerships in caring for their infants. IMPLICATIONS FOR RESEARCH: Factors identified in this study can help guide future studies. Understanding the relationship between NICU fathers and nurses can help improve interactions and communication.


Assuntos
Atitude do Pessoal de Saúde , Pai/psicologia , Enfermeiros Neonatologistas/psicologia , Relações Profissional-Família , Relações Pai-Filho , Humanos , Unidades de Terapia Intensiva Neonatal , Inquéritos e Questionários
9.
J Clin Nurs ; 28(21-22): 3977-3990, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31240757

RESUMO

AIM AND OBJECTIVE: To describe factors associated with father involvement in the neonatal intensive care unit using the Heuristic model of the dynamic of parental behaviour and influence on children over time. BACKGROUND: Research shows that infants with involved fathers have better cognitive development, fewer crying episodes after caesarean birth, improved breastfeeding exclusivity and duration, and more regular sleep patterns. Preterm infants with involved fathers have improved cognitive development. DESIGN: This cross-sectional exploratory study used survey methodology to explore factors associated with father involvement in the neonatal intensive care unit. METHODS: The STROBE checklist for cross-sectional studies was used (see Appendix S2). Biological fathers of infants in a 97-bed neonatal intensive care unit in the southern USA completed a survey which asked about their involvement with their hospitalised infants and factors which affected that involvement. Eighty fathers completed the survey. RESULTS: Age ranged between 20-53 with 43% first-time fathers. Compared to less involved fathers, fathers who were more involved were younger, married or living with the mother, performed kangaroo care or fathers of multiple gestation. Fathers who had attended the delivery were more likely to bathe their infants than those who had not attended the delivery and fathers who performed kangaroo care felt more confident than those who did not. Compared to fathers who visited less often, fathers who visited more often were younger, had infants with a shorter hospitalisation time and lower acuity, and had fewer children in the family. CONCLUSIONS: Fathers are involved with their neonatal intensive care unit infants in many ways. Factors were identified that affect involvement in the neonatal intensive care unit. RELEVANCE TO CLINICAL PRACTICE: Results can help nurses in neonatal intensive care units worldwide facilitate father-infant interaction, identify fathers at risk for decreased involvement and advocate for institutional policy development for supporting neonatal intensive care unit father involvement.


Assuntos
Relações Pai-Filho , Pai/psicologia , Unidades de Terapia Intensiva Neonatal , Adulto , Estudos Transversais , Feminino , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro/psicologia , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
10.
J Pediatr Psychol ; 42(8): 871-881, 2017 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-28369400

RESUMO

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.


Assuntos
Comunicação , Ajustamento Emocional , Neoplasias/psicologia , Relações Pais-Filho , Adolescente , Adulto , Estudos de Casos e Controles , Criança , Pré-Escolar , Feminino , Humanos , Estudos Longitudinais , Masculino , Recidiva Local de Neoplasia/patologia , Recidiva Local de Neoplasia/psicologia , Neoplasias/diagnóstico , Neoplasias/patologia
11.
Int J Palliat Nurs ; 22(2): 82-9, 2016 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-26926348

RESUMO

PURPOSE: This qualitative study examined how bereaved individuals from Honduras responded to deaths of loved ones, particularly through exploring circumstances surrounding deaths and various coping strategies. METHODS: With the help of a translator, bereaved family members in Honduras were interviewed using a semi-structured format. The interactions were audio-recorded and later translated and transcribed. RESULTS: Some 60% of individuals spent time with other family members during their loved one's end of life and 22.5% of grieving individuals took solace in spirituality or religious practices and connecting with God. Some 40% wanted to speak with others through support groups. When individuals spoke about remembering the deceased, both comforting and discomforting effects were expressed. CONCLUSIONS: Further research is needed to learn more about coping strategies in various cultures and support mechanisms that health professionals can use or suggest when working with bereaved individuals.


Assuntos
Luto , Morte , Adaptação Psicológica , Adulto , Idoso , Honduras , Humanos , Pessoa de Meia-Idade
12.
Pediatr Blood Cancer ; 62(4): 658-65, 2015 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25586983

RESUMO

BACKGROUND: This study examined the feasibility of a legacy-making intervention in children with cancer and the preliminary effects on outcomes related to quality of life. PROCEDURE: Children (N = 28) ages 7-17 years completed a baseline QOL questionnaire (PedsQL) at T1. After baseline, the intervention group (n = 15) completed a randomized intervention that guided children to answer questions about legacy-making and create a digital story about themselves. A final copy of the digital story was provided to the families. A control group (n = 13) received customary care. Children repeated the questionnaire at T2. Parents (N = 22) of children who completed the intervention completed follow-up survey questions regarding intervention effects. RESULTS: Feasibility was strong (78% participation; 1 attrition). While differences between the groups in physical, emotional, social, or school functioning change was not statistically significant, the intervention group showed slightly better emotional and school functioning compared to controls. Parents reported that their child's digital story provided emotional comfort to them (n = 11, 46%), facilitated communication between parents and children (n = 9, 38%), and was a coping strategy for them (n = 4, 17%). Parents reported that the intervention helped children express their feelings (n = 19, 79%), cope (n = 6, 27%), and feel better emotionally (n = 5, 23%). CONCLUSIONS: Our intervention is feasible for children with cancer, is developmentally appropriate for children 7-17 years of age, and demonstrates promise to improve quality of life outcomes for children with cancer and their parents.


Assuntos
Adaptação Psicológica , Emoções , Neoplasias/psicologia , Cuidados Paliativos/métodos , Qualidade de Vida , Inquéritos e Questionários , Adolescente , Criança , Feminino , Seguimentos , Humanos , Masculino , Neoplasias/terapia
13.
Pediatr Nurs ; 41(2): 65-71, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26292453

RESUMO

Animal-facilitated therapy (AFT), more specifically known as animal-assisted therapy (AAT) or "pet therapy," has had an increased presence in the literature with a surge of recent research methodologies exploring this complementary alternative medicine (CAM) intervention. However, limited studies have been conducted in the pediatric population, with many articles anecdotal in nature. A literature review included primary data sources PubMed, PsychINFO, Medline, and CINAHL, and yielded positive and beneficial outcomes to be gained through AAT in the pediatric population. Primary outcome variables of decreased anxiety and pain are the most commonly reported results. Further research studies are indicated to include the effects of AFT with children with different diseases and diagnoses. Exploration of other psychosocial and physical variables, such as self-esteem, would be useful. Interdisciplinary strategies are needed to develop interventions to help reduce patient symptoms and treatment-associated stress, as well as to facilitate healing and wellness beyond traditional medical treatment plans. Complementary therapies are of continued interest to the health care community, especially for pediatric nurses. Effective use of animals to facilitate conversation, lead discussion, or break communication barriers has been demonstrated through both research and anecdotal reports.


Assuntos
Terapia Assistida com Animais , Pediatria , Animais de Estimação , Animais , Humanos
14.
Prog Palliat Care ; 22(2): 75-79, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-25197172

RESUMO

This study examined participation factors in a study of families (N = 84) within 1 year of a child's cancer-related death. Specific aims were to examine associations between: (a) recruitment variables (number of phone calls made to eligible families, number of calls answered by eligible families) and participation rates (study agreement and refusal) and (b) characteristics of deceased children (gender, age, length of illness, time since death) and participation rates. Characteristics of deceased children did not differ between participating and non-participating families. Researchers made significantly fewer calls to participating versus refusing families. Participating families most often agreed during the first successful call connection, and more calls did not mean more recruitment success. Thus, it is reasonable to limit the number of calls made to bereaved families. Despite recruitment challenges, many bereaved parents and siblings are willing and interested to participate in grief research.

15.
J Palliat Med ; 27(1): 75-82, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37751186

RESUMO

Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. Objective: To evaluate feasibility of incorporating AAI into patient care and to assess AAI effectiveness in decreasing patient and caregiver anxiety in pediatric patients with advanced cancer, defined by relapsed or refractory disease. Design: Randomized controlled study. Setting/Subjects: Participants were children (n = 19) and parents (n = 21) who were randomized to AAI group or usual care (UC) group. Measures: Participants completed weekly measures to assess anxiety, including the 20-question State-Trait Anxiety Inventory (STAI). Results: Our results demonstrated feasibility of the use of AAI in children with advanced cancer. While they did not reveal a significant difference in anxiety scores over the four sessions in either group, parents randomized to the AAI group had lower STAI State subscores at initial visit in comparison to the UC group. The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion: Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.


Assuntos
Cuidadores , Neoplasias , Animais , Cães , Humanos , Criança , Cuidadores/psicologia , Ansiedade/terapia , Pais/psicologia , Transtornos de Ansiedade , Neoplasias/terapia
16.
J Pediatr Hematol Oncol Nurs ; 40(4): 209-216, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37032466

RESUMO

Background: Family factors, such as household income and parental psychosocial distress, have been associated with quality of life in children with cancer. However, relationships between parent anxiety and child health-related quality of life (HRQoL) have not been evaluated in children with advanced cancer. Objective: To examine relationships between parent anxiety and both parent-reported and child self-reported HRQoL for children with advanced cancer. Method: Children (aged 5-17 years) with relapsed or refractory cancer and their parents participated in this single-institution cross-sectional study. Parents completed measures of their own baseline anxiety (State-Trait Anxiety Inventory-Trait [STAI-T] form) and their ill child's HRQoL (PedsQL Generic and PedsQL Cancer, parent report). Children completed age-specific PedsQL Generic and PedsQL Cancer, child report. Spearman's rho coefficients assessed correlations between total parent STAI-T score and both parent-reported and child-reported HRQoL scales. Results: Twenty children (Mage = 9.5 years, 50% female) and their 20 parents (90% mothers) participated. The strongest and statistically significant (p < .05) correlations were inverse associations between parental trait anxiety and parent-reported child psychosocial HRQoL (rs = -.54), emotional functioning (rs = -.49), school functioning (rs = -.45), and child pain and hurt (rs = -.45). Correlations of parental anxiety with all dimensions of child-reported HRQoL were generally smaller (rs < .40), positive, and not statistically significant (p > .05). Discussion: Given the inverse correlations between parental anxiety and child psychosocial HRQoL, assessment of parent mental health needs and access to interventions should be provided routinely for parents of children with advanced cancer.


Assuntos
Neoplasias , Qualidade de Vida , Criança , Humanos , Feminino , Masculino , Estudos Transversais , Pais
17.
Am J Hosp Palliat Care ; 40(1): 34-42, 2023 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-35535490

RESUMO

BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.


Assuntos
Adaptação Psicológica , Neoplasias , Criança , Humanos , Pais/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Emoções , Internet
18.
J Fam Psychol ; 37(8): 1190-1199, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37676170

RESUMO

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


Assuntos
Neoplasias , Irmãos , Masculino , Feminino , Humanos , Irmãos/psicologia , Depressão/etiologia , Depressão/psicologia , Estudos Transversais , Pais/psicologia , Mães , Neoplasias/psicologia , Comunicação
19.
J Pediatr Psychol ; 37(2): 209-19, 2012 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-21946038

RESUMO

OBJECTIVES: To compare peer relationships among bereaved siblings and matched classmates, and to examine gender, grade level, and time since death as moderators. METHODS: Families were recruited from cancer registries at four hospitals 3-12 months after a child's death. Measures of social behavior and peer acceptance were completed by children in the classrooms of 105 bereaved siblings (ages 8-17 years). Teachers also reported on children's social behavior. Three classmates were matched for gender, race, and age to each bereaved sibling to form a comparison group (n = 311). RESULTS: Teachers reported bereaved siblings were more prosocial than comparison classmates. Peers perceived bereaved boys as more sensitive-isolated and victimized, while bereaved siblings in elementary grades were perceived by peers as less prosocial, more sensitive-isolated, less accepted, and as having fewer friends. Peers and teachers viewed bereaved siblings in middle/high school grades as higher on leadership-popularity. CONCLUSIONS: Bereaved siblings who were male and in elementary grades were more vulnerable to social difficulties, while those in middle/high school may exhibit some strengths. Ongoing research to inform the development of interventions for bereaved siblings is warranted.


Assuntos
Luto , Relações Interpessoais , Neoplasias/psicologia , Grupo Associado , Irmãos/psicologia , Adolescente , Fatores Etários , Criança , Feminino , Humanos , Masculino , Instituições Acadêmicas , Fatores Sexuais , Comportamento Social , Apoio Social
20.
J Pediatr Hematol Oncol Nurs ; 39(3): 178-184, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35467436

RESUMO

Background: Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to modify traditional in-person research to virtually delivered activities and still adhere to healthcare ethical principles of beneficence, justice, and respect for persons. Our objective is to describe ethical considerations faced by nurse investigators who modified research conducted in pediatric oncology during the COVID-19 pandemic. Methods Review of research case examples. Results Two research study case examples are presented, including remote-participant recruitment via Facebook advertising and a virtually delivered web-based legacy intervention in a pediatric oncology randomized clinical trial. Challenges to modifying in-person approaches to remote strategies are also discussed, with examples of advantages and disadvantages presented from a study testing a human-animal interaction intervention for children with cancer. Discussion Our case information may assist other investigators in planning virtually delivered behavioral strategies for populations that may prefer the convenience of remote participation in research studies because of multiple family responsibilities in the care of a family member, during the pandemic and after. As researchers understand more about subjects' preferences to receive protocol activities (i.e., virtual vs. in-person delivery), they may be able to reduce risks of being unable to collect data because eligible subjects declined or withdrew from a study due to multiple-home responsibilities during the care of a family member with a serious or life-limiting condition.


Assuntos
COVID-19 , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos , Pandemias
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