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1.
J Fam Psychol ; 2024 Mar 21.
Artículo en Inglés | MEDLINE | ID: mdl-38512214

RESUMEN

COVID-19 public health measures caused significant disruptions to child and caregivers' mental and physical well-being, including quality of life (QoL). However, in samples outside the United States (U.S.), greater resilience has been linked to lower COVID-19 impact on child QoL. Thus, understanding individual and dyadic factors contributing to resilience and QoL during COVID-19 within the United States may provide important insight for points of intervention. This study aimed to characterize the interdependent effects of child and caregiver COVID-19 impact on child and caregiver resilience, as well as on child-reported and caregiver proxy-reported child QoL. U.S. caregivers (n = 231; 95.7% female) and their 8-17-year-old children (n = 231; 54.5% male; Mage = 11.87; SDage = 2.66) reported their COVID-19 impact between May and July 2020 (T1). Follow-up self-reports on resilience and child QoL occurred between November 2020 and January 2021 (T2). Two actor-partner interdependence models (APIM) and one actor-partner interdependence mediation model (APIMeM) assessed associations among caregiver and child COVID-19 impact, resilience, and QoL. An APIM revealed significant negative actor and partner effects of COVID-19 impact on child self-reported and caregiver proxy-reported child QoL. Another APIM revealed an actor effect from COVID-19 impact to one's own resilience. The APIMeM revealed two indirect effects revealing that when children or caregivers reported greater levels of T1 COVID-19 impact, it was associated with lower levels of T2 child-reported resilience, which was subsequently associated with lower T2 child-reported QoL. Findings suggested that both child and caregiver perceptions of the pandemic were important for their own and the others' resilience, as well as child QoL. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

2.
J Palliat Med ; 27(1): 75-82, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37751186

RESUMEN

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.


Asunto(s)
Cuidadores , Neoplasias , Animales , Perros , Humanos , Niño , Cuidadores/psicología , Ansiedad/terapia , Padres/psicología , Trastornos de Ansiedad , Neoplasias/terapia
3.
J Holist Nurs ; 42(1): 49-63, 2024 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37475533

RESUMEN

Purpose: This qualitative study aimed to explore the perspectives of adolescents and young adults (AYA) on a planned nurse-patient dyadic storytelling intervention. Background: Cancer is a highly distressful event for AYA. AYA with cancer experience multidimensional suffering while dealing with their developmental transition from adolescence to young adulthood. Their unique needs require appropriate, well-tailored psychosocial support. Nurses can provide such support through storytelling approaches. METHOD: AYA cancer survivors participated in cross-sectional qualitative interviews to provide feedback on the nurse-patient storytelling intervention model. ANALYSIS: Qualitative content analysis was used to interpret and categorize the data. FINDINGS: Barriers and facilitators of the intervention emerged. Themes related to barriers included (a) the disadvantages of an online program, (b) the limitations of the in-person program, (c) interacting with nurses, (d) sharing personal stories with others, and (e) the timing of the program. Themes regarding facilitators included (a) benefits to AYA with cancer, (b) benefits to nurses, (c) benefits of online/in-person programs, and (d) willingness to participate. Conclusions: AYA with cancer may benefit from the nurse-patient dyadic storytelling intervention. Developing innovative methods to optimize and customize interventions based on preferences is essential. Future research should involve nurse feedback and tailored approaches for AYA with cancer.


Asunto(s)
Supervivientes de Cáncer , Neoplasias , Humanos , Adolescente , Adulto Joven , Adulto , Supervivientes de Cáncer/psicología , Estudios Transversales , Neoplasias/psicología , Relaciones Enfermero-Paciente , Comunicación
4.
J Pediatr Hematol Oncol Nurs ; 41(2): 85-95, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38008953

RESUMEN

Background/objectives: Little is known about the COVID-19 pandemic and its impact on the quality of life (QoL) of children with cancer who may be more vulnerable to the pandemic's effects. We examined associations between COVID-19 exposure and impact on parent-proxy reported QoL in children with cancer, and potential moderation based on the child's cancer status (i.e., time since diagnosis, on/off treatment). Design/method: Parents of children with cancer were recruited February-April 2021 via Facebook and Momcology. Parents completed the COVID-19 Exposure and Family Impact Scale and a child QoL measure. Controlling for parent age, income, child age, and child sex, we examined the indirect effect of COVID-19 impact on the association between COVID-19 exposure and parent-proxy reported child QoL, as well as the moderating role of cancer status. Results: Parents (N = 401) reported lower child QoL scores (M = 59.74) than prepandemic reports of children with cancer, t(735) = -6.98, p < .001. Mediation analyses revealed a significant indirect effect, 95% CI [-0.47, -0.13]: Higher COVID-19 exposure was associated with higher COVID-19 impact (a = 0.47, p < .001), which was related to lower QoL (b = -0.56, p < .001). The association between impact and QoL was stronger as time since diagnosis increased (95%CI [-0.08, -0.001]), yet treatment status did not moderate this path. Conclusions: Parents who report greater COVID-19 impact may also report lower QoL in their children with cancer, especially further from diagnosis. Nurses and clinicians should be aware of the pandemic's negative impact and screen for COVID-19 related distress. Additionally, results highlight the importance of long-term, family-centered care, regardless of whether children receive treatment or survivorship care.


Asunto(s)
COVID-19 , Neoplasias , Niño , Humanos , Calidad de Vida , Pandemias , COVID-19/epidemiología , Padres , Neoplasias/epidemiología
5.
J Fam Psychol ; 37(8): 1190-1199, 2023 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-37676170

RESUMEN

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


Asunto(s)
Neoplasias , Hermanos , Masculino , Femenino , Humanos , Hermanos/psicología , Depresión/etiología , Depresión/psicología , Estudios Transversales , Padres/psicología , Madres , Neoplasias/psicología , Comunicación
6.
J Pediatr Hematol Oncol Nurs ; 40(4): 209-216, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-37032466

RESUMEN

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.


Asunto(s)
Neoplasias , Calidad de Vida , Niño , Humanos , Femenino , Masculino , Estudios Transversales , Padres
7.
J Am Coll Health ; : 1-10, 2023 Apr 13.
Artículo en Inglés | MEDLINE | ID: mdl-37052579

RESUMEN

OBJECTIVE: This study examined the associations of anxiety and drinking motives with hazardous and binge alcohol use among young adults. PARTICIPANTS: We recruited young adults (N = 182, mean age 25) between November 2020 and December 2020. METHODS: Linear regressions were used to evaluate relationships among hazardous alcohol use (US Alcohol Use Disorders Identification Test-C [USAUDIT-C]), binge drinking (Alcohol Intake Questionnaire [AIQ]), PROMIS-Anxiety, COVID-19 related anxiety (CAS), and the drinking to cope with depression and anxiety subscales of the Modified Drinking Motives Questionnaire. RESULTS: Sixty-two percent of participants reported hazardous drinking (USAUDIT-C score > 4). PROMIS Anxiety and CAS scores were 63.7 and 1.0, respectively. Scores were positively associated with drinking patterns. However, the drinking to cope with depression motive significantly mediated these associations. CONCLUSIONS: After the onset of the pandemic, hazardous and binge drinking patterns among young adults were associated with drinking to cope with depression rather than anxiety.

8.
J Pediatr Nurs ; 68: 44-51, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36333168

RESUMEN

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.


Asunto(s)
Procedimientos Quirúrgicos Cardíacos , Trastornos por Estrés Postraumático , Humanos , Preescolar , Trastornos por Estrés Postraumático/epidemiología , Analgésicos Opioides/efectos adversos , Estudios Transversales , Padres , Procedimientos Quirúrgicos Cardíacos/efectos adversos , Derivados de la Morfina
9.
Am J Hosp Palliat Care ; 40(1): 34-42, 2023 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-35535490

RESUMEN

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.


Asunto(s)
Adaptación Psicológica , Neoplasias , Niño , Humanos , Padres/psicología , Neoplasias/terapia , Neoplasias/psicología , Emociones , Internet
10.
Palliat Support Care ; 21(5): 829-835, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-35938399

RESUMEN

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.


Asunto(s)
Aflicción , Servicios de Salud Mental , Neoplasias , Niño , Adulto , Femenino , Humanos , Madres/psicología , Hermanos/psicología , Neoplasias/terapia , Neoplasias/psicología
11.
Appl Nurs Res ; 65: 151574, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35577481

RESUMEN

The COVID-19 pandemic has created unique challenges for recruitment of adults and children into clinical research. The sudden onset of stay-at-home orders and social distancing enacted in much of the United States created sudden barriers for researchers to recruit participants in-person. Recognizing the critical need to understand the impact of COVID-19 on children and families in real time, studies required an alternative approach. The present study sought to develop methods and establish the feasibility of utilizing Facebook's targeted advertising to enroll schoolaged children and their parents for a study examining the impact of the COVID-19 pandemic on families. This study used an 8 week pay-per-click advertisement approach via Facebook for research recruitment. Parents of children age 8 to 17 were invited and asked to include their child. Standardized measures were included for parents and children. Zip code targeting was used to increase diversity in participants. The ad campaign reached 213,120, yielding 3563 clicks, 684 parent participants, 494 child participants and a 26% conversion rate over eight weeks. The cost-per-click was $0.64, and cost-per-participant was $3.30 and $4.60 for parents and children, respectively. This nationwide study successfully used social media to recruit a robust nationwide sample of parent-child dyads during the COVID-19 pandemic. Social media recruitment mitigated typical time and engagement barriers for participants while also circumventing social and physical distancing orders due to the pandemic which allowed for real time assessment of the pandemic's effects on families. Future consideration should be given.to social media as a research recruitment methodology.


Asunto(s)
COVID-19 , Medios de Comunicación Sociales , Adolescente , Adulto , Niño , Humanos , Pandemias , Padres , Proyectos de Investigación
12.
J Pediatr Hematol Oncol Nurs ; 39(3): 178-184, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35467436

RESUMEN

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.


Asunto(s)
COVID-19 , Enfermería de Cuidados Paliativos al Final de la Vida , Neoplasias , Humanos , Neoplasias/terapia , Cuidados Paliativos , Pandemias
13.
Pediatr Blood Cancer ; 69(6): e29707, 2022 06.
Artículo en Inglés | MEDLINE | ID: mdl-35384278

RESUMEN

AIM: Little research exists on coronavirus (COVID-19) vaccine hesitancy among caregivers of children with cancer. We aimed to (a) describe vaccine hesitancy in parents of children with cancer for both their child and self, and (b) examine the mediating role of parent-reported COVID impact on the association between COVID exposure and vaccine hesitancy. PROCEDURE: We conducted a national survey of parents of children with cancer via Facebook and Momcology, a pediatric cancer community-based organization recruited February-May 2021. Parents completed standardized measures online. A series of mediation models assessed the role of COVID-19 impact (e.g., effects on parenting and well-being) on associations between COVID-19 exposure (e.g., direct/indirect exposure) and vaccine hesitancy. Moderation models examined the role of treatment status, COVID-19 exposure, impact, and vaccine hesitancy. RESULTS: Parents (n = 491; 90% mothers; 93% White) reported moderate vaccine hesitancy (M = 2.08, SD = 0.76). Specifically, 18.5% (n = 90) reported they would not vaccinate their child, and 24.4% (n = 119) would only consider vaccination. Parents expressed higher concerns about vaccine side effects for their children (M = 3.01, SD = 0.95) than for themselves (M = 2.61, SD = 1.03; t[479] = 9.07, p < .01). Mediation analysis revealed a significant indirect effect of impact (95% CI [-0.013, -0.001]) on the association between higher exposure and higher vaccine hesitancy (b = .02, p = .06). There was no moderating effect of treatment status. Income remained a significant covariate (b = -.11, p < .01). CONCLUSION: Lower parent-reported COVID exposure, higher COVID impact, concern for side effects, and lower income may be important factors related to vaccine hesitancy among parents of children with cancer. Providers of childhood cancer survivors should address vaccine hesitancy and potential health risks.


Asunto(s)
COVID-19 , Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Neoplasias , COVID-19/epidemiología , COVID-19/prevención & control , Vacunas contra la COVID-19 , Niño , Estudios Transversales , Femenino , Humanos , Neoplasias/terapia , Padres , SARS-CoV-2 , Vacunación , Vacilación a la Vacunación
14.
Nurs Outlook ; 70(3): 506-512, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35430055

RESUMEN

BACKGROUND: Across disciplines and within higher educational systems, assessing postgraduate outcomes is essential for evaluating doctoral programs, including research-intensive nursing science doctoral programs. However, there are limited reports regarding methods and metrics related to postgraduate longitudinal evaluation of research-focused nursing doctoral programs. PURPOSE: The purpose of this paper is to summarize studies in the area of postgraduate outcome assessment and provide recommendations regarding outcome methods and metrics for evaluating the effectiveness of research-focused nursing doctoral programs. METHODS: PubMed/Medline, CINHAL Complete, and Google Scholar databases were searched using key words including PhD program, doctoral program, longitudinal evaluation, evaluation, program evaluation, PhD alumni survey, education outcomes and PhD program outcomes. We excluded non-English and full-text articles that were not available for review. DISCUSSION: Based on a review of the literature, there are few reports on methods and questionnaires for postgraduate outcome assessment. There is a critical need to develop standardized core metrics/questions, longitudinal assessments, and a shared data repository. The latter will allow for comparisons across nursing doctoral programs. CONCLUSION: Robust standardized longitudinal assessment of nursing doctoral programs is a necessary step for comparison across programs and re-envisioning the nursing doctoral education of the future.


Asunto(s)
Educación de Postgrado en Enfermería , Benchmarking , Docentes de Enfermería , Predicción , Humanos , Evaluación de Programas y Proyectos de Salud/métodos , Encuestas y Cuestionarios
15.
J Clin Psychol Med Settings ; 29(1): 230-238, 2022 03.
Artículo en Inglés | MEDLINE | ID: mdl-34173900

RESUMEN

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.


Asunto(s)
Aflicción , Neoplasias , Adolescente , Niño , Muerte , Pesar , Humanos , Masculino , Hermanos
16.
Front Psychol ; 13: 1079848, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36710839

RESUMEN

COVID-19 resulted in mass quarantine measures early in the pandemic. This disruption of daily life widened inequities and made children one of the most vulnerable populations during the crisis. This national, cross-sectional "COVID-Kids" study collected data from almost 500 parent-child dyads using standardized measures to better understand the effects of COVID exposure and impact on children's quality of life and loneliness. Data were collected via social media from May to July 2020. According to parent proxy and child self-report, United States children experienced worse quality of life (p < 0.0001; d = 0.45 and 0.53) and greater child-reported loneliness (p < 0.0001) when compared to normative, healthy samples (i.e., children who do not have a chronic medical condition). Older children (r = 0.16, p = 0.001) and female children (r = 0.11, p = 0.02) reported greater loneliness. Higher child-reported family functioning scores were associated with better quality of life (r = 0.36, p < 0.0001) and less loneliness (r = -0.49, p < 0.0001). Moderated mediation analyses indicated the indirect effect of parent COVID impact on the association between COVID exposure and child quality of life was weaker in the context of better family functioning. Results of this study raise concern for the short-and long-term sequelae of the pandemic on the physical and mental health of children. Healthcare providers and researchers must find new and innovative ways to protect the well-being of children. Strengthening family functioning may buffer the effects of the pandemic and improve overall quality of life in our "COVID Kids."

17.
Palliat Med Rep ; 2(1): 218-225, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34927145

RESUMEN

Background: Our 2012 survey of providers described legacy services offered at children's hospitals nationwide. Since then, the science related to legacy interventions has advanced, resulting in increased recognition of the importance of legacy services. Yet, legacy interventions offered by children's hospitals have not been recently described. Objective: To describe current legacy services offered by children's hospitals in the United States and compare with our previous results. Design: Descriptive cross-sectional design. Setting/Subjects: Participants included providers (N = 54) from teaching children's hospitals in the United States. Measurements: Electronic REDCap survey. Results: Similar to our prior research, 100% of respondents reported that their hospital offers legacy activities with 98% providing such services as a standard of care. Notable increased numbers of children are participating in legacy interventions compared with the previous study, now with 40% (compared with 9.5% previously) of participants reporting >50 children per year. Patients being offered legacy activities include neonatal intensive care unit (NICU) patients, those with life-threatening traumatic injuries, those on life support for extended periods of time, and those referred to hospice. Although not statistically significant, the percentage of hospitals offering legacy-making to children with cancer, neurodegenerative diseases, and life-threatening illnesses is slightly increased from the prior time point. Conclusions: Children across developmental stages and illness contexts and their families can benefit from both the memories generated through the process of legacy services and the subsequent tangible products. Providers should continue to offer legacy opportunities to seriously ill children and their families across a wide array of settings and illness contexts.

18.
Palliat Med Rep ; 2(1): 328-334, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34927159

RESUMEN

Background: The burden of relapsed/refractory childhood cancer takes an immense toll on ill children and their caregivers, jeopardizing quality of life. Animal-assisted interventions (AAIs) have shown promising benefits for children with chronic conditions and their families. Little is known about child and caregiver perspectives on AAI participation for children with advanced cancer. Objective: To explore perspectives of children with advanced cancer and their caregivers on experiences with AAIs. Design: Cross-sectional qualitative design. Setting/Subjects: Participants were children (n = 9) aged 5 to 17 years with relapsed or refractory cancer and their parents (n = 12) from one academic children's hospital in the southeastern United States. Participants completed approximately weekly 15-minute AAI sessions with a trained dog and handler during oncology clinic visits or hospitalizations for up to 12 weeks. Measures: Semistructured interviews were carried out after completion of each family's final AAI session to assess child and parent perceptions of AAIs. Qualitative content analysis identified themes. Results: Five themes emerged: (1) positive aspects, (2) negative aspects, (3) preferred changes, (4) pet ownership, and (5) value of the study. Twenty (95%) participants shared positive aspects of AAIs. The only negative aspect reported was too little time with the dog. Conclusion: Children with advanced cancer and their parents perceive AAIs as desirable with few requested changes. Further studies are needed to fully evaluate impact of AAIs. ClinicalTrials.gov Identifier: NCT03765099.

19.
Omega (Westport) ; : 302228211051524, 2021 Dec 06.
Artículo en Inglés | MEDLINE | ID: mdl-34866480

RESUMEN

An emerging body literature exists highlighting the use of Digital Storytelling as an educational, and/or therapeutic intervention. Authors of this manuscript have studied Digital Storytelling as a narrative bereavement intervention designed to help individuals make meaning of adverse life events, like the death of a family member. Until recently, Digital Storytelling is typically delivered in person. The purpose of this article is to describe the steps to implementing Digital Storytelling as a bereavement intervention in a completely virtual setting, using Zoom technology. Best practices and lessons learned for the virtual delivery of Digital Storytelling are provided.

20.
Prog Palliat Care ; 29(5): 264-271, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34737490

RESUMEN

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.

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