Background and Aims

Fatigue is a symptom commonly found in cancer patients. Measurement of fatigue is essential to understand the magnitude of the condition and to intervene accordingly. We measured fatigue levels in children with cancer receiving one course of radiotherapy treatment (RT) lasting 6 weeks to examine the trajectory of fatigue levels during and 2 weeks post treatment, and the influence of RT dose and clinical factors on fatigue scores.

Methods

A longitudinal study was conducted in Peter MacCallum Cancer Centre during Oct-2016 and Mar-2019. Among 149 children who were referred for RT, 124 were not eligible, and 25 children were eligible to take part, and were interviewed. The Childhood Fatigue Scale(CFS) was used once every week and 2 weeks post treatment.

Results

The average age of participants was 10.4 years (SD=2.12), and 60% were males. The most common diagnosis was Craniopharyngioma (20%), followed by Glioblastoma (16%) and Medulloblastoma (16%).The most common treatment sites were brain (56%). Most patients (84%) had radiotherapy and surgery. Total fatigue score, and subscales energy, function, and mood significantly increased over the course of RT treatment (p=0.009, p=0160, and p=0.008, respectively) Girls had higher fatigue scores for energy than boys (mean=13.61 (SD=5.66) for girls vs. mean=9.38 (SD=4.15) for boys, p=0.041). The relationship between RT dose and fatigue score appeared to be positive and somewhat linear, but the correlation was not statistically significant (r (23) =0.176, p=0.399). Fatigue scores did not significantly vary by age, cancer type, weight change, and medication use.

Conclusions

Our findings show that the level of fatigue over RT increased, girls experiencing higher fatigue levels than boys. However, this finding was not statistically significant in the current study and it is recommended to increase the number of participants to see if this can be seen with a larger number of participants.

Background and Aims

During treatment for cancer, children experience many side effects such as lack of

appetite, nausea, and vomiting. As a result, ensuring adequate intake puts pressure on both the child and

the parent. This study aims to determine the prevalence, causes, and consequences of eating and feeding

problems in children treated for cancer.

Methods

Parents of 85 children with cancer completed the Behavioral Pediatrics Feeding Assessment

Scale (BPFAS) and symptoms, BMI, energy intake, feeding style, and parental distress were measured at 0,

3, 6 and 12 months after diagnosis.

Results

Parent-reports revealed that almost a quarter of the children experienced eating disorder: 15.7%

experienced problems related to diminished intake and 8.6% related to excessive intake. Prevalence of

feeding disorders related to parents’ behavior was 21.1%. In children <8 years prevalence of eating and

feeding disorders was significantly higher: 31% and 36% for child and parent behavior respectively.

Younger age, poor pre-illness eating behavior, increase in symptoms and a demanding feeding style were

associated with more eating problems. Excessive eating resulted in higher energy intake, however, no

association was found between eating problems and nutritional status. Food refusal resulted in more

parental distress.

Conclusions

Especially younger children with cancer are at risk for eating and feeding problems. In

addition, poor pre-illness eating behavior, symptoms and a demanding feeding style aggravate eating

problems. Therefore, interventions should focus at diminishing side effects of treatment and instructing

parents to be less demanding regarding their child's eating behavior.

Background and Aims

Evidence shows that regular physical activity is particularly important in promoting the physical and psychological well-being, and improving quality of life among paediatric cancer survivors. Yet, more than 92.2% of Hong Kong Chinese paediatric cancer survivors did not engage in the recommended amount of 60 minutes moderate-to-vigorous physical activity per day. Research found that parents play an influential role in affecting children’s physical activity behaviours. This study aimed to explore the perception of parents on the importance, barriers and facilitators to participation in physical activity for their children surviving cancer.

Methods

A qualitative study, using a descriptive phenomenological approach, was conducted. A purposive sample of 28 parents of 9 to 16 years old paediatric cancer survivors were recruited in a paediatric oncology outpatient clinic. They were invited to participate in one-to-one 30-40 minutes semi-structured interviews. Data analysis followed Colaizzi’s descriptive phenomenology method.

Results

Four themes were identified from the interviews, including (1) perception of physical activity, (2) awareness of their child’s physical activity level, (3) perceived barriers and (4) perceived facilitators to their child to perform physical activity. Most parents of children surviving cancer perceived that physical activity was essential but overlooked its importance on the physical and psychological well-being, and quality of life of their children. Major barriers identified were time constraints, parental concern about their child in performing physical activity and lack of recreational and sports facilities and activity provision. Parental support and encouragement, family involvement and child’s interests and enjoyment appeared to be crucial facilitators to survivors’ physical activity.

Conclusions

This qualitative study suggests that the parents disregard the therapeutic effects of regular physical activity to the physical and psychological well-being, and quality of life of their child surviving cancer. It is crucial to educate the parents and get them involved in promoting regular physical activity among paediatric cancer survivors.

Background and Aims

Previous research has established that language barriers are the main barriers to providing equitable and safe care to patients with limited proficiency in a country’s majority language. Research from paediatric oncology shows that only half of the healthcare professionals state that they often use professional interpreters in care encounters, despite that they are convinced of the benefits of using interpreters. The aim of this study was to explore reasons for not using interpreters to secure safe communication for patient/families.

Methods

In this national cross-sectional study 312 medical doctors (MDs), registered nurses (RNs) and nursing assistants (NAs), at all six paediatric oncology centres in Sweden were asked to respond to the Communication over Language Barriers questionnaire. All statistical analyses were performed using R version 3.6.0. Descriptive statistics included frequencies and percentages.

Results

The respondents (n=267) often cared for patients with limited Swedish proficiency (72,1%). Financial constraints were not a reason for the limited use of interpreters as 87,1% reported that it was never a barrier. A lack of time was perceived as a barrier, especially in emergency care situations (sometimes/often 74,9%), but also in planned and routine care situations (sometimes/often 50,2%). Another barrier was the interpreter’s ability to correctly interpret medical/care terminology (good 3,6%). Respondents reported that it was difficult to control the family’s/patient’s understanding of the given information (RNs 84,7%, MDs 87,1%, NAs 69,2%) and that they were unsure whether the patient/family had received the correct information (RNs 77,6%, MDs 85,2%, NAs 67,9%).

Conclusions

This research showed that financial constraints were not reported as barriers for using interpreters. Barriers identified were a lack of time, uncertainty as to whether interpreters deliver correct information, and a lack of control of the family’s/patient’s understanding of the information. NAs trusted the correctness of the information transfer slightly more than the other professions.

Background and Aims

While exploring treatment engagement in Peru, El Salvador and Mexico (part of SIOP PODC Taskforce research in 10 resource-limited countries), survivors shared positive and negative experiences during and after treatment, including interactions with nurses. In Mexico and El Salvador, but not yet Peru, survivors are supported by Childhood Cancer International (CCI) members, however, nurses can play a key role in preparing the patient/family for survivorship.

Methods

An ethnographic investigation of recent survivors (n=32) was facilitated by local CCI groups. Two Latin American qualitative researchers conducted focus group discussions and individual in-depth interviews in Spanish, recorded and transcribed data and analyzed content.

Results

Nurses were described as being strict and in charge of keeping order on the unit, e.g., explaining rules (often about food) to the patients and parents. However, in practice, nurses were seen as somewhat flexible about rules and having a caring attitude towards patients/parents. Nurses were also perceived as always available for questions since doctors were not always present. In Mexico and El Salvador, survivors visit hospitalized children to bring hope and relief. Peruvian survivors (without foundation support) mentioned poor emotional and friendship bonds with peers, fellow survivors, and others. Transition to adult healthcare made them feel alone/abandoned without a trusted pediatric oncologist to share fears/frustrations.

Conclusions

Childhood cancer survivors may be well served by increased survivorship preparation by nurses who are well informed about pending culturally determined challenges. Nurses who have spent months with patients now nearing treatment completion and who know potential issues of survivorship can serve as a bridge to adult care. Nurse guidance and identified resources for survivors facing a life paradigm shift may help survivors to realize their imagined healthy adult lives.

Background and Aims

The trajectory of cancer has strange association with painful emotions like despair, grief, sadness and hopelessness. These painful emotions become even more painful when a child is diagnosed with cancer. Multiple studies have been published to understand psychosocial burden of childhood cancer however; there is lack of evidence on how theoritical framkworks/conceptual models can be integrated to address the unique needs of pediatric oncology patients and their families. The purpose of this literature review was to understand pediatric cancer trajectory from vulnerability to resilience through the integration of conceptual framework and the impact of such concepts for nursing practices.

Methods

The search method was done by using key words childhood cancer, family, coping, resilience, vulnerability and conceptual framework. Studies from 2010-2018 were selected. However, some old articles were also taken into consideration based on their clinical significance.

Results

To understand the process of vulnerability and resilience in the context of childhood cancer, many relevant theoretical frameworks were identified through extensive literature review. These frameworks include ABC-X model of family Stress, Conceptual framework of resilience among caregivers of pediatric cancer patients, Resiliency/New resilience model as applied to children with cancer, The natural family resilience model for pediatric cancer, The substantive theory of self-sustaining etc. These theoretical frameworks have identified diverse aspects of recommendations to better deal with the painful experiences of cancer and its treatment in order to bring positive psychosocial outcomes among pediatric patients and their families.

Conclusions

Vulnerability and resilience are both important phenomena in the field of pediatric oncology. Since, nurses spend most of their valuable time close to the patients and their families; they can play a huge role to develop inner strength and hope throughout the cancer diagnosis and its treatment process through the integration of these theoretical frameworks.