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

RESUMO

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


Assuntos
Cuidadores , Neoplasias , Animais , Cães , Humanos , Criança , Cuidadores/psicologia , Ansiedade/terapia , Pais/psicologia , Transtornos de Ansiedade , Neoplasias/terapia
2.
Curr Probl Cancer ; 47(5): 101009, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37838548

RESUMO

High-quality communication is essential for the optimal care of children with cancer and their families. There are opportunities for pediatric oncologists to engage in clear and compassionate prognostic communication across the disease trajectory including at the time of diagnosis, disease recurrence or progression, and end of life. Contrary to previously held beliefs, prognostic disclosure supports parental hope and meets the needs and expectations of families who prefer honest conversations about prognosis. These communication encounters can be challenging with many oncologists having little training in this important skill. In this summary, we aim to provide practical guidance for prognostic communication in pediatric cancer across the illness trajectory giving phrases we have found helpful including a brief overview of some published communication frameworks utilized in the care of pediatric oncology patients and families.


Assuntos
Neoplasias , Criança , Humanos , Comunicação , Oncologia , Neoplasias/diagnóstico , Neoplasias/terapia , Pais , Prognóstico
3.
J Pediatr Hematol Oncol Nurs ; 40(4): 209-216, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37032466

RESUMO

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


Assuntos
Neoplasias , Qualidade de Vida , Criança , Humanos , Feminino , Masculino , Estudos Transversais , Pais
4.
J Pediatr Hematol Oncol ; 45(1): 38-40, 2023 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-36162003

RESUMO

Histoplasmosis, a common mycosis in the south-central United States, may be life threatening in immunocompromised patients. We describe a 4-year-old female with Down syndrome and acute lymphoblastic leukemia who developed hemolytic anemia, thrombocytopenia, and renal failure, consistent with thrombotic microangiopathy. Bone marrow biopsy revealed non-necrotizing granulomas with GMS staining demonstrating budding yeast. Serum Histoplasma antigen testing was positive, providing further evidence for the diagnosis of progressive disseminated histoplasmosis. Treatment with amphotericin B, plasma exchange, and ventilator, vasopressor, and renal replacement support led to a full recovery. Providers should have a low threshold for histoplasmosis testing in ill immunocompromised patients, who are at greater risk for infection-related morbidity.


Assuntos
Síndrome de Down , Histoplasmose , Leucemia-Linfoma Linfoblástico de Células Precursoras , Microangiopatias Trombóticas , Feminino , Humanos , Criança , Pré-Escolar , Histoplasmose/complicações , Histoplasmose/diagnóstico , Histoplasmose/terapia , Síndrome de Down/complicações , Anfotericina B/uso terapêutico , Microangiopatias Trombóticas/etiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações
5.
Palliat Med Rep ; 2(1): 218-225, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34927145

RESUMO

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.

6.
Palliat Med Rep ; 2(1): 328-334, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34927159

RESUMO

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.

7.
Int J Palliat Nurs ; 27(10): 524-530, 2021 Dec 02.
Artigo em Inglês | MEDLINE | ID: mdl-34919414

RESUMO

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.


Assuntos
Pais , Qualidade de Vida , Animais , Humanos , Projetos Piloto
8.
Pediatr Blood Cancer ; 68(10): e29091, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-34165883

RESUMO

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.


Assuntos
Neoplasias , Relações Pais-Filho , Adolescente , Criança , Comunicação , Estudos Transversais , Humanos , Pais , Recidiva
9.
MedEdPORTAL ; 16: 10991, 2020 10 16.
Artigo em Inglês | MEDLINE | ID: mdl-33094157

RESUMO

Introduction: Despite growing recognition of pediatric palliative care's importance, training in palliative care communication remains a gap in medical education. Graduating medical students frequently feel unprepared to initiate or facilitate goals of care conversations with their patients, particularly in pediatrics. Methods: We created a 3-hour session featuring an introductory lecture on pediatric palliative care, communication drills on responding to emotion, and small-group case-based discussions utilizing role-play, targeting fourth-year medical students as the primary learners. Senior residents were also given the opportunity to develop skills by role-playing the patient parent and cofacilitating case discussions alongside palliative care faculty. Students evaluated session utility and their own confidence through pre- and postsession surveys using a 5-point Likert scale (1 = strongly disagree, 5 = strongly agree). Results: Twenty-six students were included in the analysis over 3 years. All agreed that the session was useful (M = 4.9). Students showed significant improvement in confidence in explaining pediatric palliative care (presession M = 3.2, postsession M = 4.1, p < .001), understanding the family experience (presession M = 2.7, postsession M = 4.1, p < .001), and eliciting goals and values from families whose children face serious illnesses (presession M = 3.1, postsession M = 4.1, p < .001). Pediatric resident cofacilitators also felt the session benefited their own teaching and communication skills. Discussion: This 3-hour interactive session on pediatric palliative care utilizing communication drills and role-play was effective in improving fourth-year medical students' confidence in communicating with families of children facing life-threatening illnesses.


Assuntos
Educação Médica , Pediatria , Estudantes de Medicina , Criança , Comunicação , Humanos , Cuidados Paliativos
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