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1.
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
2.
J Fam Psychol ; 37(8): 1190-1199, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37676170

ABSTRACT

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).


Subject(s)
Neoplasms , Siblings , Male , Female , Humans , Siblings/psychology , Depression/etiology , Depression/psychology , Cross-Sectional Studies , Parents/psychology , Mothers , Neoplasms/psychology , Communication
3.
J Pediatr Hematol Oncol Nurs ; 40(4): 209-216, 2023.
Article in English | MEDLINE | ID: mdl-37032466

ABSTRACT

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.


Subject(s)
Neoplasms , Quality of Life , Child , Humans , Female , Male , Cross-Sectional Studies , Parents
4.
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
5.
Am J Hosp Palliat Care ; 40(1): 34-42, 2023 Jan.
Article in English | MEDLINE | ID: mdl-35535490

ABSTRACT

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.


Subject(s)
Adaptation, Psychological , Neoplasms , Child , Humans , Parents/psychology , Neoplasms/therapy , Neoplasms/psychology , Emotions , Internet
6.
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
7.
J Pediatr Hematol Oncol Nurs ; 39(3): 178-184, 2022.
Article in English | MEDLINE | ID: mdl-35467436

ABSTRACT

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.


Subject(s)
COVID-19 , Hospice and Palliative Care Nursing , Neoplasms , Humans , Neoplasms/therapy , Palliative Care , Pandemics
8.
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
9.
Int J Palliat Nurs ; 27(10): 524-530, 2021 Dec 02.
Article in English | MEDLINE | ID: mdl-34919414

ABSTRACT

BACKGROUND: Children with advanced cancer and their primary caregivers may experience severe stress and anxiety in coping with their life-threatening condition. As a way to help reduce these stressors and increase overall quality of life, research suggests that animal-assisted interactions may be beneficial when integrated into palliative care. AIMS: This pilot study aims to provide evidence for the feasibility and efficacy of a randomised clinical trial using animal-assisted interactions to help improve the quality of life for children with an advanced life-threatening condition and their primary caregivers. This protocol paper outlines the basis of the research, goals, experimental design and methodology.


Subject(s)
Parents , Quality of Life , Animals , Humans , Pilot Projects
10.
Palliat Med Rep ; 2(1): 328-334, 2021.
Article in English | MEDLINE | ID: mdl-34927159

ABSTRACT

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.

11.
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.

12.
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.

13.
J Hosp Palliat Nurs ; 23(4): 331-338, 2021 08 01.
Article in English | MEDLINE | ID: mdl-34185727

ABSTRACT

Little is known about the development of posttraumatic growth among parents of children with serious advanced disease. The purpose of this study is to describe parental posttraumatic growth 100 days after pediatric stem cell transplant. This is a cross-sectional, descriptive study of 24 parents, approximately 100 days after their children received stem cell transplant. Participants reported environmental, personal, and disease characteristics and completed measures of distress, coping, rumination, and posttraumatic growth. Evidence of parental posttraumatic growth was described in each of 5 dimensions (relating to others, new possibilities, personal strength, spiritual change, and appreciation of life). Posttraumatic growth was positively associated with parental distress, disengagement coping, and rumination measures (r = 0.44-0.47, P < .05). Appreciation of life demonstrated the strongest associations with distress and rumination (r = 0.53-0.61, P < .01). Curvilinear relationships were observed for the association of distress, disengagement coping, and involuntary engagement with posttraumatic growth (P < .05). Study results highlight opportunities for palliative care nurses and clinicians to facilitate opportunities to support parent posttraumatic growth during treatment for children's advanced disease.


Subject(s)
Hematopoietic Stem Cell Transplantation , Posttraumatic Growth, Psychological , Adaptation, Psychological , Child , Cross-Sectional Studies , Hematopoietic Stem Cell Transplantation/adverse effects , Humans , Parents
14.
Contemp Clin Trials Commun ; 22: 100765, 2021 Jun.
Article in English | MEDLINE | ID: mdl-33981908

ABSTRACT

Investigations evaluating the effectiveness of music-based interventions as a complementary approach to symptom management and health promotion for cognitively-impaired children with life-limiting conditions and their families are needed to minimize the physical and psychological burdens on individuals and their caregivers. Songwriting is one music-based strategy for a remote family-centered complementary approach to improve outcomes for cognitively-impaired children with life-limiting conditions, their parents, and families. The overall purpose of this study is to test the feasibility and preliminary efficacy of a songwriting intervention for cognitively-impaired children (ages 5-17 years) who are receiving palliative or complex care and their parents. Specific aims are to: (1) determine the feasibility of songwriting for cognitively-impaired children with life-limiting conditions and their parents, and (2) examine preliminary efficacy of songwriting for child psychological distress and physical symptoms, parent psychological distress, and family environment. The protocol for this 1-group pre-and post-intervention clinical trial (N = 25) is described.

15.
Oncol Nurs Forum ; 48(3): 309-316, 2021 05 01.
Article in English | MEDLINE | ID: mdl-33855995

ABSTRACT

OBJECTIVES: To examine the effects of a legacy intervention for children with advanced cancer and their parents on parental coping strategies. SAMPLE & SETTING: The authors recruited 150 children with advanced cancer and their parents via Facebook. METHODS & VARIABLES: Child-parent dyads were randomly assigned to the intervention or usual care. Children in the intervention group created electronic digital storyboards to assist in documenting their legacies. Parents completed the Responses to Stress Questionnaire at baseline/preintervention (T1) and postintervention (T2). Linear regressions were used to test for differences between the groups in the amount of change from T1 to T2 for each parent coping score. RESULTS: Although not statistically significant, the legacy intervention showed trends toward increasing use of primary control and disengagement coping strategies in parents over time relative to usual care. IMPLICATIONS FOR NURSING: Nurses can help to facilitate opportunities for parents to use adaptive coping strategies. More work is needed to determine how legacy interventions in pediatric oncology can facilitate adaptive coping strategies for parents of children with cancer.


Subject(s)
Adaptation, Psychological , Neoplasms , Parents , Adult , Child , Humans , Internet , Surveys and Questionnaires
16.
Death Stud ; 45(4): 313-321, 2021.
Article in English | MEDLINE | ID: mdl-31274055

ABSTRACT

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.


Subject(s)
Bereavement , Grief , Adolescent , Child , Humans , Psychometrics , Reproducibility of Results , Siblings
17.
J Palliat Med ; 24(5): 680-688, 2021 05.
Article in English | MEDLINE | ID: mdl-32996842

ABSTRACT

Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and post-intervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT web-based legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.


Subject(s)
Hospice and Palliative Care Nursing , Neoplasms , Adolescent , Adult , Anxiety , Child , Humans , Palliative Care , Quality of Life
18.
J Child Fam Stud ; 29(4): 1081-1093, 2020 Apr.
Article in English | MEDLINE | ID: mdl-33343178

ABSTRACT

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

19.
Clin J Oncol Nurs ; 24(5): E57-E64, 2020 10 01.
Article in English | MEDLINE | ID: mdl-32945801

ABSTRACT

BACKGROUND: Researchers have estimated that about 50% of pediatric patients with chronic illness adhere to tacrolimus therapy, a medication responsible for preventing critical side effects in patients undergoing hematopoietic stem cell transplantation (HSCT). OBJECTIVES: The purpose of this study was to describe patient adherence to tacrolimus by reviewing documentation from the electronic health record and therapeutic drug levels. METHODS: This retrospective descriptive study examined 357 clinic visits by 57 patients undergoing HSCT. Direct (tacrolimus levels) and indirect (subjective reporting) measures were evaluated. FINDINGS: The authors found that, in 51% of visits, adherence was not documented. The overall nontherapeutic drug level rate was 60%. Because of the small sample size, nonadherence did not statistically correlate with nontherapeutic levels. The findings highlight the need for adherence awareness, assessment, and documentation in clinical practice.


Subject(s)
Hematopoietic Stem Cell Transplantation , Immunosuppressive Agents , Neoplasms , Tacrolimus , Child , Humans , Immunosuppressive Agents/therapeutic use , Medication Adherence , Neoplasms/drug therapy , Retrospective Studies , Tacrolimus/therapeutic use
20.
Palliat Med Rep ; 1(1): 321-325, 2020.
Article in English | MEDLINE | ID: mdl-34223492

ABSTRACT

Research cooperative groups aim to facilitate collaborative and rigorous palliative care research. The purpose of this article is to (1) demonstrate how cooperative groups are taking formal and sustainable steps with commitment to pediatric palliative care research programs and (2) provide an example of how one cooperative group is implementing these innovative efforts to partner with programs to integrate pediatrics on an expanding scale. Details are described for how pediatric studies can benefit from cooperative group infrastructure and expertise. In turn, we describe how cooperative groups can benefit from collaborating on pediatric studies through broadening of data dictionaries, data repositories, and reach in palliative care research communities.

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