Resilience, life satisfaction, care burden and social support of mothers with a child with acute lymphoblastic leukaemia: a comparative study.

The study aimed to make comparison between the resilience, life satisfaction, care burden and social support of mothers with a child with acute lymphoblastic leukaemia (ALL) and those with a healthy child. The study was carried out using the comparative and descriptive methods, and the study group included mothers with ALL children hospitalised in the Paediatric Haematology Clinic of a university hospital (n = 51) and those with healthy children who applied to a family health centre (n = 53). While collecting the data, Personal Information Form, Resilience Scale for Adults, Life Satisfaction Scale, Zarit Care Burden Scale and Multidimensional Scale of Perceived Social Support Scale were used. The data were statistically analysed using the SPSS program, percentages, mean scores, standard deviations, Mann-Whitney U test and pearson correlation. For the comparison of the personal information about the mothers with ALL children and about those with healthy children, chi-square or student t test for independent groups depending on the data set was used. When the mothers with ALL children were compared with those with healthy children, it was found that the methods with ALL children had statistically lower mean scores for life satisfaction (13.92 ± 6.26, p < 0.001) and resilience (17.90 ± 7.09, p < 0.001) and statistically higher mean scores for care burden (42.23 ± 16.54, p < 0.05). In this study, when the mothers of ALL children were compared with those of healthy children, it was found that the former had lower levels of resilience and life satisfaction and higher levels of care burden.

Caring for the Pediatric, Adolescent, or Young Adult Patient with Acute Lymphoblastic Leukemia.

OBJECTIVE: To summarize the issues pediatric, adolescent, and young adult patients face during and after a diagnosis of acute lymphoblastic leukemia (ALL) and guide appropriate nursing care for patients with ALL in these young age groups. DATA SOURCES: Peer-reviewed journal articles, published guidelines, patient and family resources, and data from the Surveillance, Epidemiology, and End Results Program. CONCLUSION: Nursing care of children, adolescents, and young adults with ALL requires a comprehensive approach that is appropriate for the developmental needs of patients in this age group. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses must be aware of the unique developmental challenges that pediatric, adolescent, and young adult patients face while dealing with a diagnosis of ALL, and have knowledge of resources available for these patients to effectively guide them through treatment and its side effects, fertility options, psychosocial challenges, and survivorship.

Adult Acute Lymphoblastic Leukemia: Treatment and Management Updates.

OBJECTIVE: To present an overview of novel therapies for the treatment of adult acute lymphoblastic leukemia and to discuss nursing implications for these new therapies. DATA SOURCES: Published manuscripts, Web sites, and pharmaceutical package inserts. CONCLUSION: Several promising therapies have emerged in the treatment of relapsed/refractory and minimal residual disease acute lymphoblastic leukemia. IMPLICATIONS FOR NURSING PRACTICE: With the changing paradigm for hematologic malignancies, nurses must remain current in their knowledge regarding novel therapies, including their administration, toxicity profile, and management of adverse events. This article addresses the clinical benefits of novel agents and nursing implications for those agents.

Supporting Family Caregivers of Adult and Pediatric Persons with Leukemia.

OBJECTIVES: To describe the needs and formal assessment of family caregivers and ways to intervene to alleviate distress and enhance caregiving skills in the setting of adult and pediatric leukemia. DATA SOURCES: Literature review, clinical practice observations and experiences. CONCLUSION: While rapid treatment advances in leukemia are a welcome development, the reliance on complex care delivered by family members across settings continues to grow and, concomitantly, so does the risk of mental, physical, and economic burden. IMPLICATIONS FOR NURSING PRACTICE: Oncology nurses and other clinicians should systematically incorporate screening and assessment services so that educational and referral needs are identified and intervened upon.

Chemotherapy intravenously in children with cancer at home, the nurse practitioner makes it possible!

BACKGROUND: Currently the entire treatment of a child with cancer is carried out in a specialized hospital. It would be ideal to conduct part of the treatment at home. This can only be done with adequately trained personnel. In the Netherlands, specialized pediatric oncology home care nurse practitioners have been trained to deliver this kind of care. Therefore, a pilot study was conducted to administer intravenous chemotherapy at home. PURPOSE: This study aimed to safely administer chemotherapy intravenously (iv) at home by specialized nurse practitioners and aimed to increase the quality of life (QOL) of the child and decrease the social burden in families with a child with acute lymphoblastic leukemia (ALL). METHOD: The pilot study was performed by well-trained home care nurse practitioners. Low-dose methotrexate iv and low-dose cytarabine iv were administered to 11 included children with ALL in their home environment. RESULTS: QOL increased whereas social burden decreased for patients and parents. Chemotherapy administration in the home environment was safe with the help of well-trained nurse practitioners. CONCLUSION: It is feasible to administer intravenous chemotherapy at home in a safe and efficient way. The role of the specialized pediatric oncology nurse practitioner is an essential one.

Precision medicine and health disparities: The case of pediatric acute lymphoblastic leukemia.

BACKGROUND: Precision medicine has uncertain potential to address population health disparities. PURPOSE: Case study of disparities in pediatric acute lymphoblastic leukemia (ALL). METHOD: Literature-based evaluation of ALL in African American (AA) and European American (EA) children. FINDINGS: AA children have a lower incidence of ALL than EA children, experience higher relapse rates, and are more likely to be diagnosed with poor prognostic indicators. Environmental risk exposures for ALL have small effect sizes; data are insufficient to determine their contribution to differences in incidence and prognosis. Differences in prevalence of gene variants associated with treatment response contribute to higher relapse rates in AA children. However, higher relapse rates were not seen in a care setting that eliminated out of pocket costs, used risk-directed therapy, and included rigorous case management. DISCUSSION: Unequal access to effective treatment contributes to ALL disparities. Precision medicine can help to define effective treatment for diverse patient populations.

Kids Are Moving: A Physical Activity Program for Children With Cancer.

Children undergoing cancer treatment are less active than healthy peers. Inactivity persists into survivorship, negatively influencing health and quality of life. Fatigue is one of the most prevalent symptoms during treatment yet children with increased physical activity (PA) have less fatigue. This pilot study evaluated the impact of coaching on PA and fatigue in children undergoing cancer treatment delivered by pediatric oncology nurse practitioners (NPs) during routine clinic visits. NPs used motivational interviewing during clinic visits to coach children and their families on strategies to increase PA at home. Self-report measures of PA and fatigue were completed at treatment months 2, 4, and 6. PA was also measured using actigraphy. Among 30 children ages 6 to 18 years, 7 had acute lymphoblastic leukemia (ALL), 11 had lymphoma, and 12 had solid tumors. Patterns of fatigue were different by disease group with trends to fatigue decreasing during treatment in the patients with ALL (p = .09) and lymphoma (p = .13) but increasing in those with solid tumors (p = .06). Self-report PA was unchanged. Actigraph measurements remained stable for the group. NPs reported time challenges in implementing coaching during the clinic visit and in providing coaching continuity. The intensive, repeating chemotherapy cycles in solid tumor treatment may contribute to increasing fatigue. Treatment intensity decreases during ALL and lymphoma treatment, which may allow for improvement in fatigue. Inactivity persisted during treatment but did not progress. Future research is needed to evaluate more "dose-intensive" PA interventions in larger samples of specific disease groups.

Transitional care to home in the perspective of parents of children with leukemia. / Transição de cuidados para o domicílio na perspectiva de pais de filhos com leucemia.

OBJECTIVE: To describe the experiences of parents of children and adolescents with leukemia in regards to the transition from hospital care to home. METHOD: A qualitative, descriptive study conducted with nine mothers and two fathers, in a pediatric public hospital. The data were collected through semi-structured interviews, from May 2017 to January 2017, organized in the software Atlas.ti 7® and submitted to inductive content analysis. The Change Theory was used as theoretical framework. RESULTS: The central category was "Returning home: the birth of a new reality", which originated three subcategories: apprehension with the new reality of care; immediate impact of changes; and implementing the guidance plan. CONCLUSION: The transition to the home setting made parents adapt to a new and complex reality of care. Improvements in the planning and systematization of the first hospital discharge are necessary.

Psychosocial Experiences of Young Adults Diagnosed With Acute Leukemia During Hospitalization for Induction Chemotherapy Treatment.

The diagnosis of cancer for anyone is a time of fear and uncertainty. For young adults (YAs) diagnosed with acute leukemia (AL), there are the additional challenges related to lengthy aggressive in-hospital treatment, multiple concurrent symptoms, and decreased well-being. The purpose of this study was to explore the experiences of YAs with AL undergoing induction chemotherapy. This study used a nested qualitative longitudinal design with a convenience sample. Qualitative data were collected using semistructured interviews, and participants were invited to maintain journals. The semistructured interviews were audiotaped, transcribed, and loaded into Atlas.ti for analysis. Common themes and categories were verified and used to disseminate the findings. Seven YAs, mean age 32 (SD, 4) years, participated in this study. Three thematic classifications emerged: getting through, supported yet isolated, and information exchange preferences, which detail how these YAs processed and coped during treatment. The findings from this study provide important insights for nurses regarding coping mechanisms that YAs apply, which included relying on technology and social media platforms. Additionally, the YAs in this study discussed their need for information. The findings from this study may provide insights for clinicians currently caring for YAs with AL, while also directing future palliative care research endeavors.

Transição de cuidados para o domicílio na perspectiva de pais de filhos com leucemia / Transición de cuidados para el hogar en la perspectiva de padres de hijos con leucemia / Transitional care to home in the perspective of parents of children with leukemia

Resumo OBJETIVO Descrever as experiências de pais de crianças e adolescentes com leucemia quanto à transição de cuidados do hospital para o domicílio. MÉTODO Estudo qualitativo, descritivo, realizado com nove mães e dois pais, em um hospital público pediátrico de São Paulo-SP. Os dados foram coletados por meio de entrevistas semiestruturadas, de maio de 2016 a janeiro de 2017, organizados no software Atlas.ti 7® e submetidos à análise de conteúdo indutiva. Adotou-se a Teoria das Mudanças como referencial teórico. RESULTADOS A categoria central foi "A volta para casa: apropriando-se de uma nova realidade", composta de três subcategorias: apreensão com a nova realidade de cuidados; impacto imediato das mudanças; e implementação do plano de orientações. CONCLUSÃO A transição para o domicílio fez com que os pais tivessem que se adaptar à nova e complexa realidade de cuidados. Melhorias no planejamento e sistematização da primeira alta mostram-se necessárias.

Resumen OBJETIVO Describir las experiencias de padres de niños y adolescentes con leucemia en cuanto a la transición de cuidados del hospital para el hogar. MÉTODO Estudio cualitativo, descriptivo, realizado con nove madres y dos padres, en un hospital público pediátrica en São Paulo-SP. La recolecta de datos fue llevada a cabo mediante entrevistas semiestructuradas, de mayo de 2016 a enero de 2017, organizados en el software Atlas.ti 7® y sometidos al análisis de contenido inductivo. La Teoría de los Cambios fue utilizada como referencial teórico. RESULTADOS La categoría central fue "La volta a casa: el nacimiento de una nova realidad", que derivo tres subcategorías: aprensión con la nova realidad de cuidados; impacto inmediato de las mudanzas; e implementación del plano de orientación. CONCLUSIÓN La transición hacia el domicilio ha hecho que los padres se adapten a una nueva y compleja realidad de cuidados. Las mejoras en la planificación y sistematización de la primera alta se muestran necesarias.

Abstract OBJECTIVE To describe the experiences of parents of children and adolescents with leukemia in regards to the transition from hospital care to home. METHOD A qualitative, descriptive study conducted with nine mothers and two fathers, in a pediatric public hospital. The data were collected through semi-structured interviews, from May 2017 to January 2017, organized in the software Atlas.ti 7® and submitted to inductive content analysis. The Change Theory was used as theoretical framework. RESULTS The central category was "Returning home: the birth of a new reality", which originated three subcategories: apprehension with the new reality of care; immediate impact of changes; and implementing the guidance plan. CONCLUSION The transition to the home setting made parents adapt to a new and complex reality of care. Improvements in the planning and systematization of the first hospital discharge are necessary.

The Impact of School Visits on Siblings of Children With Cancer.

BACKGROUND: Childhood cancer affects the entire family. Siblings experience similar stress to that of the ill child, including anger, depression, jealousy, guilt, and social isolation. School reentry programs are shown to be positive interventions for patients, it is hypothesized that similar outcomes exist for siblings. OBJECTIVE: To examine the feasibility of studying the impact of the Ontario Oncology Nurse School Visitation Program on the well-being and school adjustment of siblings of pediatric cancer patients. METHODS: Fourteen sibling participants and parents completed a semistructured interview and the PedsQL® questionnaire before and after a nurse school visit. School attendance was also compared and data were collected for logistics of study procedures. RESULTS: The mode of data collection was agreeable and easy to plan and execute. School attendance showed a reduction of days missed; there was no significant impact on PedsQL results but the interviews yielded positive feedback. CONCLUSIONS: The outlook for siblings improves with the support of family members and health care professionals. This pilot study provides hypotheses and design for future research.

The Impact of a Childhood Cancer Diagnosis on the Children and Siblings' School Attendance, Performance, and Activities: A Qualitative Descriptive Study.

Families of children with cancer are confronted with unexpected out-of-pocket expenses and productivity costs associated with the diagnosis. One productivity cost that falls on children is the impact of cancer on children's school attendance, performance, and activities (eg, play, friendships, and socialization). Nested within the Childhood Cancer Cost Study, this qualitative descriptive study used convenience sampling to recruit and interview parents of children newly diagnosed with cancer. Content analysis techniques were used to inductively descriptive the semistructured interview data. Sixty-six parents of 65 children with cancer and of 73 siblings participated. The most commonly reported productivity loss in children with cancer was school absenteeism mainly due to cancer treatment. Children fell behind their classmates academically and lost important social time with peers. A few siblings also fell behind their peers primarily due to limited parental attention. Parents adopted various strategies to lessen the impact of the diagnosis on their children's school attendance, performance, and activities. Providing parents with additional resources and support may optimize their children's academic and social reintegration into school.

Adherence to Oral Medications During Maintenance Therapy Among Children and Adolescents With Acute Lymphoblastic Leukemia: A Medication Refill Analysis.

Adherence to oral medications during maintenance therapy is essential for pediatric patients with acute lymphoblastic leukemia. Self-reported or electronic monitoring of adherence indicate suboptimal adherence, particularly among particular sociodemographic groups. This study used medication refill records to examine adherence among a national sample of pediatric patients with acute lymphoblastic leukemia. Patients in a national claims database, aged 0 to 21 years with a diagnosis of acute lymphoblastic leukemia and in the maintenance phase of treatment, were included. Medication possession ratios were used as measures of adherence. Overall adherence and adherence by sociodemographic groups were examined. Adherence rates were 85% for 6-mercaptopurine and 81% for methotrexate. Adherence was poorer among patients 12 years and older. Oral medication adherence rates were suboptimal and similar to or lower than previously documented rates using other methods of assessing adherence. Refill records offer a promising avenue for monitoring adherence. Additional work to identify groups most at-risk for poor adherence is needed. Nurses are well positioned to routinely monitor for medication adherence and to collaborate with the multidisciplinary team to address barriers to adherence.

Leukostasis: Management to Prevent Crisis in Acute Leukemia
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BACKGROUND: Hyperleukocytosis, a peripheral white blood cell count greater than 100,000/mm3,is most commonly seen in patients with newly diagnosed or relapsed acute lymphoblastic leukemia and acute myeloid leukemia. Leukostasis is a reduction in blood flow related to hyperviscosity. Hyperleukocytosis, causing leukostasis, is an oncologic emergency and requires an exacting assessment and rapid response with appropriate intervention to prevent morbidity and mortality in the first week after diagnosis. OBJECTIVES: The objectives of this article are to equip oncology nurse to identify patients with hyperleukocytosis and to provide nursing interventions that will ensure safe, quality care. METHODS: A case study is used to demonstrate key concepts that are critical in early assessment, identification, and treatment of patients with leukostasis.
. FINDINGS: Oncology nurses well versed in the pathophysiology, clinical presentation, and management of leukostasis can make a significant contribution to the safe management of patients with cancer.

The Relationship of Genetics, Nursing Practice, and Informatics Tools in 6-Mercaptopurine Dosing in Pediatric Oncology [Formula: see text].

An antileukemic agent prescribed for pediatric oncology patients during the maintenance phase of therapy for acute lymphoblastic leukemia, 6-mercaptopurine (6-MP), is highly influenced by genetic variations in the thiopurine S-methyltransferase enzyme. As such, 6-MP must be dosed so that patients with 1 or 2 inactive thiopurine S-methyltransferase alleles will not incur an increased risk for myelosuppression or other toxicities. Informatics tools such as clinical decision support systems are useful for the application of this and similar pharmacogenetics information to the realm of nursing and clinical practice for safe and effective patient care. This article will discuss pharmacogenetics and the associated use of 6-MP; present implications for nursing practice; identify informatics tools such as clinical decision support systems, which can greatly enhance the care of patients whose treatment is based on critical genetic information; and examine the relationship of genetics, nursing practice, and informatics for 6-MP dosing in pediatric oncology.

Necessidades de saúde de familiares de crianças com leucemia: conversas e metáforas no itinerário de cuidados / Health Needs of Family Members of Children with Leukemia: conversations and methaphores in the care itinerary

A família pode ser uma aliada importante na suspeição da leucemia ao narrar as manifestações dos primeiros sinais de adoecimento da criança para o profissional de saúde que a acompanha regularmente. Para evitar antecipações geradoras de pânico, sofrimento, angústias e desesperança, é preciso monitorar mais restritamente as necessidades da família e das crianças menores de cinco anos, por meio de uma comunicação terapêutica qualificada e construção de vinculo no território do cuidado. Investigaram-se como objeto de estudo as necessidades de familiares de crianças com leucemia linfoide aguda (LLA) no itinerário de cuidados em saúde, a partir dos primeiros sinais de adoecimento. Os objetivos foram: a) descrever o itinerário percorrido por familiares ou não para atender as necessidades da criança, quando perceberam os primeiros sinais de adoecimento; b) identificar, na narrativa dos familiares, aqueles sinais associados à suspeição, investigação e definição do diagnóstico de LLA; c) compreender a comunicação da notícia do diagnóstico; e d) analisar o itinerário do tratamento e a construção das redes na resolutividade do adoecimento da criança e da família. Método: Pesquisa qualitativa implementada com o método narrativo. Participaram sete familiares cuidadores de cinco crianças com LLA, entre junho e setembro de 2016, em cenários da comunidade de livre escolha dos residentes nas cidades do Rio de Janeiro e São Bernardo do Campo. As entrevistas narrativas, presenciais (6/7) e virtuais (1/7), foram mediadas pelas técnicas de criatividade e sensibilidade Mapa Falante e Corpo Saber. Pesquisa aprovada pelo Comitê de Ética em Pesquisa com o Parecer nº 1.517.322. A análise de conversação resultou em cinco unidades de análise: sinais de adoecimento; itinerário da suspeição ao diagnóstico; a comunicação da notícia; itinerário do tratamento e intercorrências; redes social e de apoio no itinerário de cuidados. Resultados: A memória dos primeiros sinais de adoecimento da criança os relacionou às doenças mais comuns na infância, sem associação inicial com a LLA. As boas condições de vida, acesso aos serviços privados x de saúde e tecnologia de investigação diagnóstica, vínculo da criança com um profissional de saúde de referência e autonomia contribuíram para que houvesse a suspeição e se iniciasse a investigação diagnóstica. A integralidade do cuidado foi determinante para que o diagnóstico e tratamento da LLA ocorressem em tempo oportuno. A comunicação da notícia do diagnóstico foi marcada pelo despreparo profissional. As redes de apoio e social contribuíram para a superação das adversidades e o impacto da doença na vida dos familiares e das crianças com LLA no itinerário de cuidados. Conclusão: As narrativas das famílias indicam a necessidade da realização de exame físico completo, comunicação e escuta terapêutica dos familiares, construção de vínculo e confiança com o enfermeiro e o médico; e monitoramento restrito da criança com LLA, em todo o curso da doença, do tratamento e na fase de monitoramento da sobrevivência.(AU)

The Stoplight Program: A Proactive Physical Therapy Intervention for Children With Acute Lymphoblastic Leukemia.

Chemotherapy may cause neuromuscular impairments that can have life-long effects. The Stoplight Program (SLP) was developed as a proactive physical therapy (PT) intervention directed at impairments in children with acute lymphoblastic leukemia (ALL). In this program evaluation, we assessed the feasibility of the SLP delivered as part of standard care and identified body function and activity patterns in patients who received the intervention. Children ages 1 to 22 years, diagnosed with ALL, received an assessment by a physical therapist as part of usual care. The SLP intervention used 3 levels to categorize the impairment levels and intensity of PT. Of the children (n = 135) screened, 46% completed 5 intervention visits and 32% completed the program and met discharge criteria. At initial assessment, 46% of children ages 1 to 5 years and 67% of children ages 6 to 22 years had abnormal motor function. Those completing the program tested within the healthy norms. Research is needed on variables that influence adherence to a PT program and the range of functional impairment and activity limitations in this population.

How Can I Promote Healing Outside of My Clinical Setting for Patients in Need of a Transplantation?

Nurses are individuals called to both care for patients and families and facilitate the healing process. Our profession fills a unique role in health care as oncology nurses combine medical science with the art of interpersonal relationships to provide both physical and emotional support for patients. Promoting healing and facilitating adjustment draws individuals to become exceptional nurses and is an innate quality of oncology nurses (American Nurses Association, 2016). It is a characteristic not easily separated from one's personality. Often, nurses become frustrated in their inability to do more for a patient or the family members. This feeling becomes particularly prevalent in life-limiting or life-threatening conditions, most notably cancer.
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The Experiences of Parents of Pediatric Patients With Acute Lymphoblastic Leukemia, 2 Months After Completion of Treatment.

Diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) can be a highly stressful time for the entire family. While completion of treatment may bring relief to some families, it may also bring about additional anxieties and fear. The primary objective of this article is to present an analysis of the experiences, emotional states, and support needs of parents of pediatric cancer patients 2 months after treatment completion for ALL. Using a qualitative interpretive description approach, transcripts from interviews with 17 parents from the leukemia/lymphoma program of a large urban pediatric cancer center were analyzed using N-Vivo 10 data analysis software. Parents reported simultaneous feelings of relief and apprehension, changing relationships with their health care team and the experience of returning to a life following treatment. Results highlight the need for support for parents on completion of treatment.