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1.
J Pediatr Nurs ; 68: 44-51, 2023.
Article in English | MEDLINE | ID: mdl-36333168

ABSTRACT

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.


Subject(s)
Cardiac Surgical Procedures , Stress Disorders, Post-Traumatic , Humans , Child, Preschool , Stress Disorders, Post-Traumatic/epidemiology , Analgesics, Opioid/adverse effects , Cross-Sectional Studies , Parents , Cardiac Surgical Procedures/adverse effects , Morphine Derivatives
2.
Palliat Support Care ; 21(5): 829-835, 2023 Oct.
Article in English | MEDLINE | ID: mdl-35938399

ABSTRACT

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.


Subject(s)
Bereavement , Mental Health Services , Neoplasms , Child , Adult , Female , Humans , Mothers/psychology , Siblings/psychology , Neoplasms/therapy , Neoplasms/psychology
3.
Pediatr Blood Cancer ; 69(6): e29707, 2022 06.
Article in English | MEDLINE | ID: mdl-35384278

ABSTRACT

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.


Subject(s)
COVID-19 , Drug-Related Side Effects and Adverse Reactions , Neoplasms , COVID-19/epidemiology , COVID-19/prevention & control , COVID-19 Vaccines , Child , Cross-Sectional Studies , Female , Humans , Neoplasms/therapy , Parents , SARS-CoV-2 , Vaccination , Vaccination Hesitancy
4.
Appl Nurs Res ; 65: 151574, 2022 06.
Article in English | MEDLINE | ID: mdl-35577481

ABSTRACT

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.


Subject(s)
COVID-19 , Social Media , Adolescent , Adult , Child , Humans , Pandemics , Parents , Research Design
5.
J Clin Psychol Med Settings ; 29(1): 230-238, 2022 03.
Article in English | MEDLINE | ID: mdl-34173900

ABSTRACT

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.


Subject(s)
Bereavement , Neoplasms , Adolescent , Child , Death , Grief , Humans , Male , Siblings
6.
Nurs Outlook ; 70(3): 506-512, 2022.
Article in English | MEDLINE | ID: mdl-35430055

ABSTRACT

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.


Subject(s)
Education, Nursing, Graduate , Benchmarking , Faculty, Nursing , Forecasting , Humans , Program Evaluation/methods , Surveys and Questionnaires
7.
Pediatr Blood Cancer ; 68(10): e29091, 2021 10.
Article in English | MEDLINE | ID: mdl-34165883

ABSTRACT

BACKGROUND: A diagnosis of childhood cancer results in new parent-child communication challenges. Little is known about how communication changes over time after diagnosis or relapse. The objective of this study was to determine the effect of time since diagnosis and relapse on quality of parent-child communication. We hypothesized that there would be a positive correlation between time and quality of parent-child communication. METHODS: Cross-sectional study in children (7-17 years) with relapsed/refractory cancer and their caregivers, who spoke English, were not cognitively impaired, and had internet access. Parents were recruited through Facebook ads. Parents and children completed the Parent-Adolescent Communication Scale (PACS), a 20-item measure of communication quality, with openness and problem subscales. Spearman's rho (rs ) coefficients assessed correlations between PACS scores and time since diagnosis/relapse. RESULTS: There was a statistically significant negative correlation between parent PACS scores and time since child's cancer diagnosis (rs  = -0.21, p = .02), indicating a tendency for overall worsening communication as time since diagnosis increased. There was a positive correlation between the parent PACS problem scores and time since diagnosis (rs  = +0.22, p = .01), indicating more problematic communication as time since diagnosis increased. Correlations of time since relapse and PACS scores were small and not statistically significant. CONCLUSION: Parent-child communication worsens over time following a child's cancer diagnosis with more communication problems, contrary to our hypothesis. Future studies are needed to evaluate intervention timing to best support parent-child communication beyond the new-diagnosis period.


Subject(s)
Neoplasms , Parent-Child Relations , Adolescent , Child , Communication , Cross-Sectional Studies , Humans , Parents , Recurrence
8.
Omega (Westport) ; : 302228211051524, 2021 Dec 06.
Article in English | MEDLINE | ID: mdl-34866480

ABSTRACT

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.

9.
Prog Palliat Care ; 29(5): 264-271, 2021.
Article in English | MEDLINE | ID: mdl-34737490

ABSTRACT

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.

10.
Prog Palliat Care ; 29(3): 130-139, 2021.
Article in English | MEDLINE | ID: mdl-34239227

ABSTRACT

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.

11.
Pediatr Transplant ; 24(6): e13786, 2020 09.
Article in English | MEDLINE | ID: mdl-32678483

ABSTRACT

Pediatric HSCT patients endure complicated treatment regimens, lifestyle modifications, and a lifetime of long-term follow-up. Treatment adherence in this population is understudied and prevalence unknown. Providers (physicians and advanced practice nurses) in this study completed an online-structured questionnaire about definition, assessment, and perceived rates of adherence. Researchers' extracted 187 statements from participants' responses. The majority (n = 12, 71%) of providers reported adherence as a primary concern in outpatient HSCT. The major concern for providers was the potential of non-adherence to negatively affect outcomes. Providers also shared clinical examples of non-adherence. This study contributes to a better understanding of providers' perceptions of adherence within pediatric HSCT. Additional research is needed to describe, define, and improve adherence in pediatric HSCT to ultimately improve outcomes and quality of life for this vulnerable population.


Subject(s)
Attitude of Health Personnel , Hematopoietic Stem Cell Transplantation/methods , Patient Compliance , Perception , Child , Female , Grounded Theory , Humans , Internet , Life Style , Male , Mentors , Outpatients , Prevalence , Qualitative Research , Quality of Life , Surveys and Questionnaires , Treatment Outcome , Vulnerable Populations
12.
Pediatr Transplant ; 23(5): e13451, 2019 08.
Article in English | MEDLINE | ID: mdl-31066981

ABSTRACT

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.


Subject(s)
Biomarkers/blood , Graft vs Host Disease/blood , Hematopoietic Stem Cell Transplantation , Immunosuppressive Agents/pharmacokinetics , Tacrolimus/pharmacokinetics , Adolescent , Child , Child, Preschool , Dose-Response Relationship, Drug , Female , Humans , Immunosuppressive Agents/administration & dosage , Infant , Male , Predictive Value of Tests , Retrospective Studies , Sensitivity and Specificity , Tacrolimus/administration & dosage , Young Adult
13.
Int J Palliat Nurs ; 22(2): 82-9, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26926348

ABSTRACT

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.


Subject(s)
Bereavement , Death , Adaptation, Psychological , Adult , Aged , Honduras , Humans , Middle Aged
14.
Pediatr Blood Cancer ; 62(4): 658-65, 2015 Apr.
Article in English | MEDLINE | ID: mdl-25586983

ABSTRACT

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.


Subject(s)
Adaptation, Psychological , Emotions , Neoplasms/psychology , Palliative Care/methods , Quality of Life , Surveys and Questionnaires , Adolescent , Child , Female , Follow-Up Studies , Humans , Male , Neoplasms/therapy
15.
Prog Palliat Care ; 22(2): 75-79, 2014 Apr.
Article in English | MEDLINE | ID: mdl-25197172

ABSTRACT

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.

16.
J Holist Nurs ; 42(1): 49-63, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37475533

ABSTRACT

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.


Subject(s)
Cancer Survivors , Neoplasms , Humans , Adolescent , Young Adult , Adult , Cancer Survivors/psychology , Cross-Sectional Studies , Neoplasms/psychology , Nurse-Patient Relations , Communication
17.
PLoS One ; 19(8): e0308091, 2024.
Article in English | MEDLINE | ID: mdl-39146346

ABSTRACT

Social contexts (e.g., family, friends) are important in predicting and preventing loneliness in middle childhood (MC) and adolescence; however, these social contexts were disrupted during the COVID-19 pandemic. Comparison of social context factors that may differentially contribute to loneliness at each developmental stage (MC vs. adolescence) during the COVID-19 pandemic have been overlooked. This study examined longitudinal predictors of loneliness, including social contexts and COVID-19 impact, within MC (8-12y) and adolescence (13-17y). Parents reported on demographic information, and their children completed surveys on COVID-19 impact, loneliness, and family functioning using the COVID-19 Exposure and Family Impact Survey (CEFIS), the NIH Toolbox Loneliness (Ages 8-17) measure, and the PROMIS Family Relationships Short Form 4a measure, respectively. Regression models examined time one (T1; May-June 2020) predictors of time two (T2; November 2020-January 2021) MC child (n=92, Mage=10.03) and adolescent (n=56, Mage=14.66) loneliness. For the MC child model, significant predictors of higher loneliness included worse family functioning as well as higher COVID-19 impact and lower family income. On the other hand, higher adolescent loneliness was significantly predicted by not having married/partnered parents and was marginally significantly predicted by higher COVID-19 impact. The regression model with the full sample and interaction terms revealed no significant interactions, but that lower family functioning and higher COVID-19 impact were significant predictors of higher loneliness. Lower family income and lower in-person communication were marginally significant predictors of higher loneliness in the combined interaction model. Lastly, further exploratory mediation analyses displayed that family functioning significantly mediated the relationship between COVID-19 impact and T2 loneliness only for MC children and the full sample. Results support future interventions focused on optimizing family functioning to help mitigate MC loneliness in the context of adversity, such as a global pandemic.


Subject(s)
COVID-19 , Loneliness , Humans , Loneliness/psychology , COVID-19/psychology , COVID-19/epidemiology , Adolescent , Child , Male , Female , Pandemics , SARS-CoV-2 , Surveys and Questionnaires , Longitudinal Studies , Family Relations/psychology
18.
J Pediatr Hematol Oncol Nurs ; : 27527530241267296, 2024 Sep 10.
Article in English | MEDLINE | ID: mdl-39257031

ABSTRACT

Background: Legacy building is a priority for pediatric oncology. Storytelling is one strategy to help children document their legacies. Understanding story content would advance knowledge of how children want to be remembered but this has yet to be explored. This study explored content of digital stories created by children with advanced cancer. Method: Facebook advertisements were used to recruit families of children (7-17) with relapsed/refractory cancer to participate in a randomized controlled trial testing a legacy intervention through storytelling. Parent-child dyads (N = 150) were randomly assigned to an intervention or usual care group. A web program guided children to answer legacy questions and upload photographs, movies, and music. Families received the final digital stories. Experienced qualitative coders developed a hierarchical coding system to identify major categories/subcategories within 78 stories. Results: Stories included 1,516 unique story entries, including text, photographs, and movies. Two major categories emerged from the data: (a) story entry medium and (b) story content. Photographs frequently reflected people, objects, pets, and places while text often described personal preferences, goals, dreams, and other people. The story content overall included references to (a) people, (b) setting/location, (c) cancer, (d) objects/activities, and (e) expression of emotions/beliefs. Exemplar quotes, counts, and frequencies for each category are reported. Discussion: Children documented their legacies through stories that emphasized the value of family relationships and children's desires to be known for personal traits/preferences. Children chose to include cancer in their stories, indicating that cancer is a part of how children perceive their legacies. Registration Number: ClinicalTrials.gov NCT04059393.

19.
J Palliat Med ; 27(1): 75-82, 2024 Jan.
Article in English | MEDLINE | ID: mdl-37751186

ABSTRACT

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.


Subject(s)
Caregivers , Neoplasms , Animals , Dogs , Humans , Child , Caregivers/psychology , Anxiety/therapy , Parents/psychology , Anxiety Disorders , Neoplasms/therapy
20.
J Pediatr Hematol Oncol Nurs ; 41(2): 85-95, 2024.
Article in English | MEDLINE | ID: mdl-38008953

ABSTRACT

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.


Subject(s)
COVID-19 , Neoplasms , Child , Humans , Quality of Life , Pandemics , COVID-19/epidemiology , Parents , Neoplasms/epidemiology
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