Emotional symptoms and family functioning in caregivers of children with newly diagnosed leukemia/lymphomas and solid tumors: Short-term changes and related demographic factors.

BACKGROUND: Pediatric oncology diagnoses are distressing to caregivers. However, researchers have not investigated the impact that the type of cancer diagnosis has on caregiver anxiety, depression, distress, and family functioning. The purpose of this study was to longitudinally investigate the early trajectory of caregiver psychological symptoms of anxiety, depression, distress, and family functioning near diagnosis and 6 months later by cancer type, and to examine the demographic factors that may be associated with caregiver emotional and family functioning outcomes. METHODS: Caregivers (n = 122) of children with a recent diagnosis of leukemia/lymphoma or solid tumor completed self-report measures of psychological and family functioning (Hospital Anxiety and Depression Scale, Distress Thermometer, and Family Environment Scale). RESULTS: In general, caregivers endorsed elevated psychological symptoms at the time of diagnosis, which decreased 6 months later. Caregivers of children with solid tumors endorsed greater anxiety across time than caregivers of children with leukemia/lymphoma did. In addition to caring for a child with a solid tumor, female sex, non-White ethnicity, and non-English language spoken in the home were factors associated with anxious and depressive symptoms and poorer family functioning. CONCLUSION: When creating psychosocial interventions for families of children with cancer, the unique demands of solid tumor treatments, the caregiver's sex, and cultural characteristics must be considered to promote coping, resiliency, and problem-solving skills around the time of diagnosis, particularly in more vulnerable families.

Recognition and management of leukaemia in children.

Leukaemia is the most common cancer in children. The presenting manifestations can be wide-ranging, from a relatively well child to life-threatening complications. Symptoms can be manifested in any of the bodily systems. Undertaking a thorough clinical assessment of the child, in addition to recognising and addressing parental concerns, is vital. Furthermore, recognising that children can commonly present with musculoskeletal or abdominal symptoms increases the diagnostic yield, thereby preventing missed or late diagnoses. Childhood cancer has a huge impact on the child and their family, both at diagnosis and in the long term; providing advice and signposting families to appropriate support groups is an important aspect of their management. Nurses play a vital role in managing children with cancers, starting from raising suspicion and identifying the child with leukaemia, ensuring that high-quality care is delivered throughout their treatment, managing complications, and providing support and information to children and their families. An illustrative case study is included to highlight some of the challenges that health professionals may encounter in their clinical practice.

Perspectives on advance care planning in haematopoietic stem cell transplantation: a qualitative study.

BACKGROUND: Advance care planning (ACP) engagement and completion of advance directives remain low in patients undergoing haematopoietic stem cell transplantation, despite the high risk of treatment-related mortality. AIM: To understand the barriers to and facilitators of ACP in haematopoietic stem cell transplantation. METHODS: This qualitative study used interpretive description methodology. The researchers conducted audio-recorded semi-structured interviews with participants. The constant comparative method was used to analyse data. RESULTS: A total of six patients, five family members and eight clinicians participated in the study. Perceived barriers to ACP included: lack of time, lack of process, lack of understanding of disease/treatment and ACP, need to keep positive and prognostic uncertainty. Potential facilitators of ACP included: early and frequent discussion of ACP, incorporating ACP into routine care, involvement of the multidisciplinary team and framing discussions on ACP as positive. CONCLUSIONS: Haematopoietic stem cell transplantation poses unique challenges for patients, families and clinicians when it comes to ACP. Introducing advance care planning as part of standard care and providing ongoing facilitation of ACP, including discussion of disease and treatment expectations at the outset and when complications arise may assist patients and families in recognising how ACP can fit into and enhance their care.

THE MANY FACES OF CARING IN NURSING.

Nonverbal communication is essential with children. Nurses are challenged when answers to assessment questions include shoulder shrugs and descriptions of 'ouchies' and pain all over that feels 'bad.' Pediatric nursing requires creativity and eliciting expression of emotions nonverbally. One way our patients express themselves is through art therapy. The art therapist on our unit uses masks with children who choose not to express themselves with words. I chose to create a mask as sculpture to nonverbally share my values, feelings, and compassion, just like my pediatric patients. As I worked with the mask, many faces of nursing emerged.

Models of survivorship care provision in adult patients with haematological cancer: an integrative literature review.

PURPOSE: Increasing numbers of haematology cancer survivors warrants identification of the most effective model of survivorship care to survivors from a diverse range of haematological cancers with aggressive treatment regimens. This review aimed to identify models of survivorship care to support the needs of haematology cancer survivors. METHOD: An integrative literature review method utilised a search of electronic databases (CINAHL, Medline, PsycInfo, PubMed, EMBASE, PsycArticles, and Cochrane Library) for eligible articles (up to July 2014). Articles were included if they proposed or reported the use of a model of care for haematology cancer survivors. RESULTS: Fourteen articles were included in this review. Eight articles proposed and described models of care, and six reported the use of a range of survivorship models of care in haematology cancer survivors. No randomised controlled trials or literature reviews were found to have been undertaken specifically with this cohort of cancer survivors. There was variation in the models described and who provided the survivorship care. CONCLUSION: Due to the lack of studies evaluating the effectiveness of models of care, it is difficult to determine the best model of care for haematology cancer survivors. Many different models of care are being put into practice before robust research is conducted. Therefore, well-designed high-quality pragmatic randomised controlled trials are required to inform clinical practice.

[Hospital at home care for children with leukaemia]. / L'hospitalisation à domicile de l'enfant atteint de leucémie.

The care pathway of a child with leukaemia is long and often difficult. The different professionals work together to ensure optimal care management. Hospital at home forms part of this pathway in partnership with the inhospital departments, the general practitioner and the day hospital. This link between the different professionals is assured by the hospital at home child health nurse coordinator.

[The role of the nurse and child health nurse in a haematology day hospital]. / Le rôle de l'infirmière et de la puéricultrice en hôpital de jour d'hématologie.

The paediatric haemato-oncology nurse and the child health nurse in a day hospital have specific technical skills and in-depth knowledge in order to be able to provide global care for children with leukaemia. Close collaboration between the different professionals working in this care unit is essential.

A mother's perspective: the power of holistic care for the terminally ill child.

This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.

[Reclaiming the body through touch-relaxation massage]. / Se réapproprier son corps grâce au toucher-massage.

More than just a simple technique, touch-relaxation massage in the protected haematology unit of Nantes general hospital has become a real personalised act of care, in what are often difficult conditions of hospitalisation. It forms part of the global support of patients suffering from leukaemia.

[The perception of hospital by the siblings of children with cancer]. / La perception de i'hôpital par la fratrie d'un enfant traité pour un cancer.

The perception of hospital by the brothers and sisters of a child being treated for cancer is often ignored. Research based on interviews with children, with the participation of nurses and the psychologist of an onco-haematology department, attempts to analyse the importance of the involvement of siblings in the improvement of treatment.

Treatment for acute leukaemia: elderly patients' lived experiences.

AIM: The aim of this study was to explore the lived experiences of elderly patients with acute leukaemia receiving chemotherapy. METHOD: Seven elderly patients were interviewed and van Manen's approach to data analysis was used in interpreting the participants' interview transcripts. FINDINGS: Three main themes were interpreted from the study participants' narratives: emotions experienced upon diagnosis; the need of support from family, friends, and healthcare professionals; and the importance of information. CONCLUSION: Although some of the findings are similar to those of previous studies examining patients with other cancers, this is the first known study to examine the lived experience of elderly patients receiving chemotherapy for acute leukaemia. All participants experienced shock and fear at diagnosis. Despite their advancing age, all participants expressed the hope that treatments would provide a good quality of life and, in some cases, even cure. With good support from family, friends and healthcare professionals, participants revealed that they learnt to cope with the diagnosis and its treatments.

The Roles of Nurses in Hematopoietic Cell Transplantation for the Treatment of Leukemia in Older Adults.

OBJECTIVE: To review and summarize nurses' roles in the care of the older adult undergoing an allogeneic hematopoietic cell transplant (HCT) for the treatment of leukemia. DATA SOURCES: Published literature indexed in PubMed, CINAHL, textbooks, and clinical expertise. CONCLUSION: Nurses are a vital component of the highly specialized care delivered before, during, and after an allogeneic HCT. IMPLICATIONS FOR NURSING PRACTICE: Nurses who are prepared for the complex HCT care trajectory will be able to optimally meet the complex needs of the older adult patient and their caregiver(s).

Childhood Cancer Symptom Cluster: Leukemia and Health-Related Quality of Life.

OBJECTIVES: To examine the relationship of the Childhood Cancer Symptom Cluster-Leukemia (CCSC-L) with health-related quality of life (HRQOL). SAMPLE & SETTING: 327 children receiving treatment for acute lymphoblastic leukemia from four pediatric oncology programs across the United States. METHODS & VARIABLES: Participants completed fatigue, sleep disturbance, pain, nausea, and depression symptom questionnaires at four time points; these symptoms comprised the CCSC-L. HRQOL was measured at the start of postinduction therapy and then at the start of maintenance therapy. Relationships between the CCSC-L and HRQOL scores were examined with longitudinal parallel-process modeling. RESULTS: The mean HRQOL significantly increased over time (p < 0.001). The CCSC-L had a significant negative association with HRQOL scores at the start of postinduction therapy (beta = -0.53, p < 0.005) and the start of maintenance therapy (beta = -0.33, p < 0.015). Participants with more severe symptoms in the CCSC-L over time had significantly lower HRQOL at the start of maintenance therapy (beta = -0.42, p < 0.005). IMPLICATIONS FOR NURSING: Nurses are pivotal in providing management strategies to minimize symptom severity that may improve HRQOL.

Role of advanced nurse practitioners in the care pathway for children diagnosed with leukemia.

PURPOSE: The development of advanced nursing practices (ANP) can meet challenges presented by evolving needs of health care. We aimed at describing the approach taken to implement ANP in a pediatric oncology-hematology unit. METHOD: The Participatory, Evidence-informed, Patient-centered Process for Advanced practice was considered as a conceptual framework for the development, implementation and evaluation of the nursing role. Successive steps were taken for identifying patients and family needs, defining the health care priorities, and establishing a new health care model. RESULTS: The seven steps of the PEPPA framework were carried out over a year and contributed to the identification of the tasks and the role of the advanced nurse practitioner in the patient care pathway. The implementation of ANP was gradually achieved with the development of new evidenced-based health care procedures. The subsequent approval of a contract specification for advanced nurse practitioners facilitated the onset of a specific consultation, which facilitated a holistic approach. CONCLUSION: The impact of the implementation can be appreciated at different levels: i) the patient and his or her family, with improvement of communication and continuity of care; ii) the interdisciplinary team, with development of a dynamic and greater motivation of the health care providers; and iii) the profession, with a greater recognition of the competencies and conceptualization of the new role. An assessment of the process, the structure and the results should be carried out to validate the role of the advanced nurse practitioner throughout the long journey of a child with leukemia.

Health-Related Quality of Life of Nepalese Children With Leukemia Using Pediatric Quality of Life Inventory 4.0 Generic Core Scale.

Health-related quality of life (HRQOL) is an essential measure to consider when evaluating the full impact of illness in children diagnosed with leukemia. The purpose of the current study was to assess the overall HRQOL and specific functioning subscales of Nepalese children with leukemia using Pediatric Quality of Life Inventory 4.0 Generic Core Scale (PedsQL 4.0), compare self-report with parent proxy report of HRQOL and to identify the determinants affecting HRQOL. After cultural linguistic validation of PedsQL, a descriptive cross-sectional study was conducted on 43 children with leukemia and their parents in B. P. Koirala Memorial Cancer Hospital, Bharatpur via interview schedule. Among the subscales of HRQOL both the child's self-report and parent proxy report scores were highest in social functioning and lowest in emotional functioning subscale. Intraclass correlation coefficient between proxy reports and self-reports were highest (0.828) in physical functioning and lowest (0.493) in social functioning subscales. Age group was significantly associated with the total score, physical functioning subscale, and emotional functioning subscale of only proxy scores. Leukemic children's age-specific needs should be addressed properly to improve their overall HRQOL.

Financial Assistance for Patients Who Relocate for Specialist Care in Hematology: Practical Findings to Inform Nursing Supportive Care.

AIMS: This article examines findings on the need for, awareness of, and critical time for referral to financial assistance for patients who have to relocate for specialist care for hematological malignancies. DESIGN: The study involved descriptive qualitative research based on in-depth interviews that were audio-recorded, transcribed verbatim, coded, and thematically analyzed. PARTICIPANTS: Forty-five hematology patients purposively selected from the client database of the Leukaemia Foundation of Queensland were interviewed for the study. RESULTS AND CONCLUSION: The findings indicate that there is a critical period at the initial point of diagnosis and start of treatment when patients are experiencing shock, confusion, and a sense of being overwhelmed by stress, fear, and uncertainty about the future. The stress can be exacerbated by the loss of work and a period of waiting to access income (e.g., from superannuation or approval to receive a pension). For some patients, this is a critical period when individuals need support and advice to avoid long-term financial problems. However, at this point in time, many individuals do not know how to access financial advice or assistance from leading cancer supportive care organizations. The findings have practical implications to inform the work by many nurses who provide psychosocial care to hematology patients.

Identifying the unmet supportive care needs, with concomitant influencing factors, in adult acute leukemia patients in China.

PURPOSE: To understand the supportive care needs (SCNs), with associated influencing factors, related to five unmet need dimensions in adult Acute Leukemia (AL) patients, in China. METHODS: This multi-center cross-sectional study enrolled 340 pathologically confirmed adult, Chinese AL patients who were requested to complete a self-reported questionnaire, detailing demographic information, general status and physical functions, and Supportive Care Needs Survey-Short Form 34 (SCNS-SF34), revealing their unmet SCNs. The variables were statistically analyzed. RESULTS: A total of 311 (91.4%) effective questionnaires were retrieved. Among the 5 dimensions, the health information dimension scored the highest, 47.72(43.18), followed by psychological dimension, 35.00(32.50), while the sexual need scored the lowest, 0.00(24.99). As per multiple stepwise regression analysis, marital status, treatment stages and Karnofsky Performance Status index (KPS) score significantly influenced the health information dimension, while the age and "whether the treatment was the initial one or not" influenced sexual need dimension. KPS score and income were the common factors influencing the rest of the three dimensions with treatment stage adding to two of them except "physiological and daily living needs" dimension. "Being informed about your test results as soon as possible", "Being informed about things you can do to help yourself to get well" and "Being informed about cancer which is under control or in remission" were the three highest scoring entries. CONCLUSIONS: The results of this study reveal the unmet SCN's, with its influencing factors, in AL patients, the understanding of which may be of assistance in designing/delivering effective clinical nursing intervention.

Effects of Slow-Stroke Back Massage on Symptom Cluster in Adult Patients With Acute Leukemia: Supportive Care in Cancer Nursing.

BACKGROUND: Patients with acute leukemia usually experience pain, fatigue, and sleep disorders, which affect their quality of life. Massage therapy, as a nondrug approach, can be useful in controlling such problems. However, very few studies have been conducted on the effects of massage therapy on the complications of leukemia. OBJECTIVE: The aim of this study was to examine the effects of slow-stroke back massage (SSBM) on the symptom cluster in acute leukemia adult patients undergoing chemotherapy. METHODS: In this randomized controlled trial, 60 patients with acute leukemia were allocated randomly to either the intervention or control group. The intervention group received SSBM 3 times a week (every other day for 10 minutes) for 4 weeks. The pain, fatigue, and sleep disorder intensities were measured using the numeric rating scale. The sleep quality was measured using the Pittsburgh Sleep Quality Index. Statistical tests of χ, t test, and the repeated-measure analysis of variance were used for data analysis. RESULTS: Results showed that the SSBM intervention significantly reduced the progressive sleep disorder, pain, fatigue, and improved sleep quality over time. CONCLUSIONS: Slow-stroke back massage, as a simple, noninvasive, and cost-effective approach, along with routine nursing care, can be used to improve the symptom cluster of pain, fatigue, and sleep disorders in leukemia patients. IMPLICATIONS FOR PRACTICE: Oncology nurses can increase their knowledge regarding this symptom cluster and work to diminish the cluster components by using SSBM in adult leukemia patients.